thyroid misery

TherapyBoy · 08-12-2020 8:46pm

Make an appointment to see an endocrinologist & they’ll be better suited to solving any thyroid problems you have.

i57dwun4yb1pt8 · 05-02-2021 10:44pm

TherapyBoy wrote: »

Make an appointment to see an endocrinologist & they’ll be better suited to solving any thyroid problems you have.

yeah, you'd think that but that the ones so far ive seen are usless outside of the norm.

Galbin · 07-02-2021 10:29pm

Holland Unkempt Neurology wrote: »

yeah, you'd think that but that the ones so far ive seen are usless outside of the norm.

In my 13 years of reading books, pursuing thyroid forums and groups, meeting thyroid patients socially, and even attending one thyroid patient conference, it seems to me that thyroid patients can be divided into two groups.

The first group take Eltroxin only, have their symptoms improve, do a blood test once a year, and feel great. This group are almost always quite young. The second group take Eltroxin, but battle with depression, high cholesterol, weight troubles, stomach issues, dry skin, and hair loss, yet their blood tests look "great" or "normal". They are then gaslit by the medical professional, especially by endos who truly believe that the TSH test is an accurate marker and that it's just a coincidence that the patient still exhibits hypothyroid symptoms while on Eltroxin. This second group is much larger than the first, but endos ignore their existence. The best you will get from an endo in this country is the tiniest amount of T3, but its use will be firmly controlled by the TSH.

All of this completely ignores some of the wonderful science out there that shows how poor a marker TSH actually is:

https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0022552 (This landmark study has largely gone ignored by endocrinologists)

https://www.frontiersin.org/articles/10.3389/fendo.2015.00177/full

https://www.tpauk.com/main/article/rethinking-the-tsh-test-and-why-the-tsh-test-needs-to-be-abandoned/

People in this country often have to go abroad to get proper thyroid treatment. That's what I did, and it was completely worth it. You only get one life, and endos just aren't helpful at all if Eltroxin doesn't work for you.

Cuttlefish · 08-02-2021 3:46pm

Going to my GP in morning for a number of small issues but mainly thyroid and mainly because of my dry skin and sudden bouts of tiredness that can come over me during waking hours especially if I am at my work desk or sitting down at home

He said it might be due to thyroid but does not want to rule out other causes such as sleep apnea

Cuttlefish · 15-02-2021 7:55pm

Cuttlefish wrote: »

Going to my GP in morning for a number of small issues but mainly thyroid and mainly because of my dry skin and sudden bouts of tiredness that can come over me during waking hours especially if I am at my work desk or sitting down at home

He said it might be due to thyroid but does not want to rule out other causes such as sleep apnea

OK so the blood results are back

TSH in 2019 - 3.5
TSH in 2020 - 5.5

TSH in 2021 - 34!!

Also Vitamin B12 is low

So MIGHT explain weight gain, itchy skin, tiredness etc

Now on 100mg of Letroxin everyday for 2 months and B12 vitamins and blood test in two months

Anyone else have a reading increase like that???

Wyldwood · 15-02-2021 8:24pm

My TSH numbers have swung between 0.03 and 35.5. T4 swings wildly in tune with TSH. You're not alone. Hope you can find your sweet spot with the meds quickly. Thyroid illness is no fun.

tanit · 15-02-2021 9:12pm

Cuttlefish wrote: »

OK so the blood results are back

TSH in 2019 - 3.5
TSH in 2020 - 5.5

TSH in 2021 - 34!!

Also Vitamin B12 is low

So MIGHT explain weight gain, itchy skin, tiredness etc

Now on 100mg of Letroxin everyday for 2 months and B12 vitamins and blood test in two months

Anyone else have a reading increase like that???

The doctor should have recommended blood tests again after maybe a couple of months in 2019 because you were already showing signs that something was not right and most definitely in 2020 once you get to 5.5 you need to start looking what is going on. You should not have needed to get to that situation.

Best of luck with the treatment and the tests in 2 months

Cuttlefish · 15-02-2021 9:30pm

Wyldwood wrote: »

My TSH numbers have swung between 0.03 and 35.5. T4 swings wildly in tune with TSH. You're not alone. Hope you can find your sweet spot with the meds quickly. Thyroid illness is no fun.

May I ask what dosage are you on now?

Will commence 2 x 50 micro grams in morning for 2 months then blood tests again

along with Vitamin B12

Can I also ask how did it affect you? weight gain? sudden tiredness etc?

Wyldwood · 15-02-2021 11:58pm

Cuttlefish I'm an outlier when it comes to thyroid issues. I was posting on this thread 10 years ago about my fluctuating levels and I'm still the same today. I appear to have developed an intolerance to thyroxine medication.

Following thyroid surgery for Graves, I took 100mcg Eltroxin for 30 years without a problem until for no apparent reason my TSH took a nose dive to 0.11 with all the associated symptoms. It took me two years to get back to normal levels with tiny amounts of Eltroxin. I have swung up and down in the past 10 years and am constantly adjusting the dose. I currently take 25mcg Eltroxin last thing at night as I'm in a hyper phase again. There is some evidence to support that by taking it at night it can be better absorbed.

When my TSH is too high I get constipated and very tired, no energy, dry skin and weight gain and when I'm hyper it's the opposite. Strangely, I get palpitations with both hyper & hypo but they disappear when tests are in range.

I know this is a very long thread but there are some very useful posts in the earlier part from some very knowledgeable people if you have the time to read them.

cee_jay · 16-02-2021 12:08am

I have read some conflicting information on when best to take Eltroxin - some have said to take first thing in the morning and avoid caffeine for an hour afterwards. Have you got a link to evidence on taking it at night please?
I am only taking it since December - beginning to feel like it is making a difference now though, due back for a blood test next month to see if it has helped.

Wyldwood · 16-02-2021 12:23pm

cee_jay wrote: »

I have read some conflicting information on when best to take Eltroxin - some have said to take first thing in the morning and avoid caffeine for an hour afterwards. Have you got a link to evidence on taking it at night please?

I take it at night, 2 hours after my last meal, on the advice of my Endocrinologist to try to control the fluctuating levels.

If you're only on it since December I wouldn't change your routine without consulting your doctor. Bedtime seems to suit me better but might not be for everyone.

This is one study I found
https://www.thyroid.org/patient-thyroid-information/ct-for-patients/vol-4-issue-5/vol-4-issue-5-p-7/

cee_jay · 16-02-2021 12:27pm

Thanks, my instruction just said take one a day - nothing else. I haven't been waiting an hour to eat or anything like that. Will see what the bloods show next month.

Galbin · 16-02-2021 3:08pm

Wyldwood wrote: »

Following thyroid surgery for Graves, I took 100mcg Eltroxin for 30 years without a problem until for no apparent reason my TSH took a nose dive to 0.11 with all the associated symptoms. It took me two years to get back to normal levels with tiny amounts of Eltroxin. I have swung up and down in the past 10 years and am constantly adjusting the dose. I currently take 25mcg Eltroxin last thing at night as I'm in a hyper phase again. There is some evidence to support that by taking it at night it can be better absorbed.

When my TSH is too high I get constipated and very tired, no energy, dry skin and weight gain and when I'm hyper it's the opposite. Strangely, I get palpitations with both hyper & hypo but they disappear when tests are in range.

I don't know much about Graves, but one of the reasons why progressive thyroid doctors (which sadly we don't seem to have in Ireland) dose by FT4 and FT3 is that until TSH is suppressed a person can have those up and down wild swings. Also, dosing by TSH is simply not the way to go.

Quoting from this landmark study:

"More than 20% of these patients, despite normal TSH levels, do not maintain FT3 or FT4 values in the reference range, reflecting the inadequacy of peripheral deiodination to compensate for the absent T3 secretion. The long-term effects of chronic tissue exposure to abnormal T3/T4 ratio are unknown but a sensitive marker of target organ response to thyroid hormones (serum TSH) suggests that this condition causes an abnormal pituitary response. A more physiological treatment than levothyroxine monotherapy may be required in some hypothyroid patients."

In plain English, a significant percentage of thyroid patients have normal TSH levels, but low FT4 and low FT3 (the one thyroid hormone that actually correlates with symptoms in studies, but is almost never tested). Those people do not convert T4 to T3 properly and Eltroxin only may not work properly in these patients.

So, you can have normal TSH and low FT4/low FT3 OR high TSH and low FT4/FT3 levels. TSH is simply not a great marker - apart from at the extremes. Also, if the body cannot convert the T4 in Eltroxin to T3, T4 levels build-up and the person can feel a delightful combination of both hyper and hypo thyroid at the same time. Not fun.

coconnellz · 20-04-2021 8:15pm

First post here only discovered this forum today, I was diagnosed with hypothyroidism past 5 years, I have being taking eltroxin ever since. I was taking 125 mg a day for first 2 years, but it was reduced down to 100mg about 6 months ago felt like going hyperthyroidism finding it hard to sleep, more recently developed a rash like called Acanthosis nigricans would this be related to my hypothyroidism? Thanks

TherapyBoy · 20-04-2021 11:06pm

coconnellz wrote: »

First post here only discovered this forum today, I was diagnosed with hypothyroidism past 5 years, I have being taking eltroxin ever since. I was taking 125 mg a day for first 2 years, but it was reduced down to 100mg about 6 months ago felt like going hyperthyroidism finding it hard to sleep, more recently developed a rash like called Acanthosis nigricans would this be related to my hypothyroidism? Thanks

Best to get in touch with whatever doctor is prescribing the eltroxin for you. Describe the symptoms you’re experiencing & ask them if there is any link between taking the drug & the problems you’re having.

Eltroxin can be notoriously slow to take effect (or even to change its effects when you change your dosage). It can be worth giving it some time after a dosage change, although 6 months should be time enough for any changes to be apparent. Like I said above, it’s best to check any problems you’re having with your prescribing doctor (& stay away from Dr. Google as much as possible!)

Also, Eltroxin doses are normally measured in ‘mcg’ rather than ‘mg’. It’s a minor detail but just for reference, 100mg = 100000mcg.

Cuttlefish · 21-04-2021 8:37am

Cuttlefish wrote: »

OK so the blood results are back

TSH in 2019 - 3.5
TSH in 2020 - 5.5

TSH in 2021 - 34!!

Also Vitamin B12 is low

So MIGHT explain weight gain, itchy skin, tiredness etc

Now on 100mg of Letroxin everyday for 2 months and B12 vitamins and blood test in two months

Anyone else have a reading increase like that???

Morning Folks

Off for a blood test today after 2+ months on 100mcg of Eltroxin and 1000mcg of Vitamin B12

Interesting to see what results I get now

Will keep you all informed

Dempo1 · 21-04-2021 8:57am

Cuttlefish wrote: »

Morning Folks

Off for a blood test today after 2+ months on 100mcg of Eltroxin and 1000mcg of Vitamin B12

Interesting to see what results I get now

Will keep you all informed

Good luck today

Dempo1 · 21-04-2021 9:16am

Morning all.

I'm seeing a number of posts regarding Eltroxin, it's not a medication I've ever been prescribed. It would seem its for different forms of Hypothyroidism?

My diagnosis is Graves Disease, with added complications of High Bood pressure, Very high Cholesterol (Despite no weight or signs) and fast heart rate. I've recently been advise I am pre diabetic.

My Meds Daily
Neomercazole 5mg (Took a while to get it to this level) Day

Amlodipine Teva 5mg (Blood pressure) Day

Telmisartan 80mg (Blood pressure) Day

Atorvastatin Teva 40mg (Cholesterol) Night.

It's been Three years now since Graves Diagnosis & 2 years for additional complications. Honestly and apart from chronic insomnia and morning muscular pains, I'm generally fine.

My question, Graves seems quite rare, I had hoped for a reduction in meds but it would seem I'm in this for the long haul. My endocrinologist really excellent and GP too, I wondered is Graves Disease likely to be long term? for life? particularly given the added complications it has brought on. I will add I've rarely missed my meds but when it happens, it's astonishing what occurs.

Thanks in advance of any input.

tanit · 22-04-2021 1:35pm

Dempo1 wrote: »

Morning all.

I'm seeing a number of posts regarding Eltroxin, it's not a medication I've ever been prescribed. It would seem its for different forms of Hypothyroidism?

My diagnosis is Graves Disease, with added complications of High Bood pressure, Very high Cholesterol (Despite no weight or signs) and fast heart rate. I've recently been advise I am pre diabetic.

My Meds Daily
Neomercazole 5mg (Took a while to get it to this level) Day

Amlodipine Teva 5mg (Blood pressure) Day

Telmisartan 80mg (Blood pressure) Day

Atorvastatin Teva 40mg (Cholesterol) Night.

It's been Three years now since Graves Diagnosis & 2 years for additional complications. Honestly and apart from chronic insomnia and morning muscular pains, I'm generally fine.

My question, Graves seems quite rare, I had hoped for a reduction in meds but it would seem I'm in this for the long haul. My endocrinologist really excellent and GP too, I wondered is Graves Disease likely to be long term? for life? particularly given the added complications it has brought on. I will add I've rarely missed my meds but when it happens, it's astonishing what occurs.

Thanks in advance of any input.

Graves disease leads to overproducing thyroid hormone so the medications you have been prescribed would try to shut down that over production. Eltroxin is prescribed to people that do not produce enough thyroid hormone to replace what the thyroid is not producing/converting (synthetic T4 that needs to be converted in the body to T3 via the muscles and whatever is left working in your thyroid). Your symptoms for hyperthyroidism are going to be different than the ones experienced by someone suffering from hypothyroidism. I'm not familiar with Graves but I assume that at this stage your condition is for life, on occasion hyper and hypo conditions could be temporary due to many reasons but if your doctors say is permanent it is going to be that way.

My guess is that if you have very strong reactions to missing your medications it might be a good idea to maybe set up reminders on your phone, calendars etc to avoid any issues and it might be also a good idea to talk with your doctor about it. Everyone misses a dose now and them so just be honest when discussing your condition with them and share your concerns.

Best of luck

Dempo1 · 22-04-2021 1:39pm

tanit wrote: »

Graves disease leads to overproducing thyroid hormone so the medications you have been prescribed would try to shut down that over production. Eltroxin is prescribed to people that do not produce enough thyroid hormone to replace what the thyroid is not producing/converting (synthetic T4 that needs to be converted in the body to T3 via the muscles and whatever is left working in your thyroid). Your symptoms for hyperthyroidism are going to be different than the ones experienced by someone suffering from hypothyroidism. I'm not familiar with Graves but I assume that at this stage your condition is for life, on occasion hyper and hypo conditions could be temporary due to many reasons but if your doctors say is permanent it is going to be that way.

My guess is that if you have very strong reactions to missing your medications it might be a good idea to maybe set up reminders on your phone, calendars etc to avoid any issues and it might be also a good idea to talk with your doctor about it. Everyone misses a dose now and them so just be honest when discussing your condition with them and share your concerns.

Best of luck

Really very helpful and appreciated, I've never quite understood the differences between hypo/hyper and now so much makes sense.

Yes indeed I've learned my lesson re missing meds and have 2 reminders daily.

Thanks so much, sincerely appreciate the response

Galbin · 22-04-2021 3:33pm

coconnellz wrote: »

First post here only discovered this forum today, I was diagnosed with hypothyroidism past 5 years, I have being taking eltroxin ever since. I was taking 125 mg a day for first 2 years, but it was reduced down to 100mg about 6 months ago felt like going hyperthyroidism finding it hard to sleep, more recently developed a rash like called Acanthosis nigricans would this be related to my hypothyroidism? Thanks

Acanthosis nigricans is related to Addison's disease, PCOS, insulin resistance, pre-diabetes/diabetes. I would ask to be tested for all of these, bearing in mind that it seems impossible to get a fasting insulin test for a non-diabetic for some odd reason. I had to pay privately for mine and send it to a UK lab.

How are your symptoms on Eltroxin? Most people are unfortunately not symptom-free on it. And if you have undiagnosed Addison's/low cortisol, your body will find it hard to process the amount of thyroid hormone your body actually needs. I have Addison's myself, and couldn't cope with thyroid hormone at all until I got treated for the Addison's.

Galbin · 23-04-2021 1:58pm

Not sure if this is allowed, so please delete if it isn't mods.

Anyway, I got this e-mail about a free thyroid webinar on the 27th of April with Dr Heroghe. Dr Hertoghe's grandfather is the doctor who discovered Hertoghe's sign (the common symptom of losing the outer third of one's eyebrow in hypothyroidism). So he and his family have been working with thyroid patients for generations. He is also an absolutely lovely man, but that is beside the point!

Sign-up link: https://zoom.us/webinar/register/6716171129996/WN_urBmEPMOSV6ZHNcyZxv2_w

Cuttlefish · 23-04-2021 9:19pm

Cuttlefish wrote: »

Morning Folks

Off for a blood test today after 2+ months on 100mcg of Eltroxin and 1000mcg of Vitamin B12

Interesting to see what results I get now

Will keep you all informed

Well the results are in....!!

Thyroid readings:

TSH in 2019 - 3.5
TSH in 2020 - 5.5

TSH in Feb 2021 - 34!
TSH in April 2021 - 13

So now on 150mcg every Mon/ Wed/ Fri

and 100mcg every other day

Go back in three months for another blood test

B12 reading 230 so that is good am absorbing B12, Will change to 1000micro gramm tablet every second day!!

OkeyDoke12 · 23-04-2021 10:39pm

I got these tests done in my doctors a few weeks ago I normally just get my thyroid levels checked but asked for antibodies test.
My doctor has me on eltroxin 100mg and even after this test will not increase.

Just wanted to ask what is people's opinions on the results?

Dempo1 · 13-05-2021 9:28am

Morning, just wondering has anyone with Thyroid issues recieved a Covid-19 vacinne yet. I've booked mine, awaiting appointment. Not at all sure if Graves Disease is an issue re vacinne, type etc. My main concern is additional complications re High blood pressure and levels of cholesterol all of which requiring Meds.

Any thoughts appreciated

TherapyBoy · 13-05-2021 10:46am

Dempo1 wrote: »

Morning, just wondering has anyone with Thyroid issues recieved a Covid-19 vacinne yet. I've booked mine, awaiting appointment. Not at all sure if Graves Disease is an issue re vacinne, type etc. My main concern is additional complications re High blood pressure and levels of cholesterol all of which requiring Meds.

Any thoughts appreciated

I received my first dose of the vaccine about 4/5 weeks ago but my thyroid issues seem to be on the opposite end of the scale to yours from reading your posts - my thyroid is completely non-functional since the nineties due to an ongoing reoccurring brain tumour. After the vaccine I was mildly ill for 2 days or so but no other major problems.

The best way to deal with any concerns you have is to get in touch with the Doctor who’s dealing with your Graves Disease & prescribing the medications you are taking. They’ll know your history best & will be aware of any issues receiving the vaccine might present in conflict with your current meds etc. It can be difficult sometimes to contact your Doctors but the best way I’ve found to get a prompt reply from your Doctor is to email them directly, if they are practising privately or attached to a hospital their current email address will be easy enough to find.

Dempo1 · 13-05-2021 11:21am

TherapyBoy wrote: »

I received my first dose of the vaccine about 4/5 weeks ago but my thyroid issues seem to be on the opposite end of the scale to yours from reading your posts - my thyroid is completely non-functional since the nineties due to an ongoing reoccurring brain tumour. After the vaccine I was mildly ill for 2 days or so but no other major problems.

The best way to deal with any concerns you have is to get in touch with the Doctor who’s dealing with your Graves Disease & prescribing the medications you are taking. They’ll know your history best & will be aware of any issues receiving the vaccine might present in conflict with your current meds etc. It can be difficult sometimes to contact your Doctors but the best way I’ve found to get a prompt reply from your Doctor is to email them directly, if they are practising privately or attached to a hospital their current email address will be easy enough to find.

Morning and thanks for your response, yes, I do seem to be on the opposite end of the scale and you've certainly had many challenges and I wish you well.

It's been incredibly difficult to get through to GP but I'm not overly concerned, I believe before appointment confirmed, there's a detailed questionnaire re meds etc, so should tick all the boxes.

Happy to hear you received first dose. Keep positive and we'll and thanks again.

TherapyBoy · 13-05-2021 11:41am

Dempo1 wrote: »

Morning and thanks for your response, yes, I do seem to be on the opposite end of the scale and you've certainly had many challenges and I wish you well.

It's been incredibly difficult to get through to GP but I'm not overly concerned, I believe before appointment confirmed, there's a detailed questionnaire re meds etc, so should tick all the boxes.

Happy to hear you received first dose. Keep positive and we'll and thanks again.

Are you seeing anyone besides your GP with regards to your thyroid problems, maybe an endocrinologist or some other specialist?

Dempo1 · 13-05-2021 12:25pm

TherapyBoy wrote: »

Are you seeing anyone besides your GP with regards to your thyroid problems, maybe an endocrinologist or some other specialist?

I'm seeing an endocrinologist but appointments have been curtailed to telephone every 3 months as clinics restricted because of pandemic. I might actually try and call the clinic, I'm due consultation shortly, had hoped it might be before I get vacinne. My primary concern not Graves as such, it's high blood pressure etc. I'm not aware Thyroid Disease of concern re vacinne but I've read some info on the risks and Covid-19.

Thanks again

TherapyBoy · 13-05-2021 12:47pm

Dempo1 wrote: »

I'm seeing an endocrinologist but appointments have been curtailed to telephone every 3 months as clinics restricted because of pandemic. I might actually try and call the clinic, I'm due consultation shortly, had hoped it might be before I get vacinne. My primary concern not Graves as such, it's high blood pressure etc. I'm not aware Thyroid Disease of concern re vacinne but I've read some info on the risks and Covid-19.

Thanks again

Email your endocrinologist directly, today.

Dempo1 · 13-05-2021 12:54pm

TherapyBoy wrote: »

Email your endocrinologist directly, today.

Just spoke to him and absolutely no concerns so positive news

Galbin · 19-05-2021 4:44pm

OkeyDoke12 wrote: »

I got these tests done in my doctors a few weeks ago I normally just get my thyroid levels checked but asked for antibodies test.
My doctor has me on eltroxin 100mg and even after this test will not increase.

Just wanted to ask what is people's opinions on the results?

Sorry, I am only seeing this now. That TSH is way too high. Personally, from my experience and reading of thyroid science*, I think that TSH is pretty useless and that we should go by FT4 and FT3. Even with that though, that TSH is too high. I imagine you feel pretty tired etc. with that high a TSH. I would be looking for a new doctor to be honest, but that is just me.

Can you afford to pay privately to get a full thyroid panel including T3? With a T4 of that level and a TSH that high your FT3 is probably pretty inadequate. How do you feel?

*Patients have been saying for decades that TSH simply does not correlate with their symptoms unless extremely high or extremely low. OTOH, FT3 seems to correlate most closely with symptoms. Thyroid science is finally starting to demonstrate this, but 99% of endos worldwide do not want to open their minds to the emerging evidence base on this. As a result, as long as TSH is normal they leave it at that.

Hannibal_Smith · 25-05-2021 10:50am

I had an overactive thyroid. It's now recently become underactive. I just had to find somewhere to get this out - I am absolutely frozen! I know it's not that warm out in any event, but my goodness I am absolutely freezing!

New Home · 25-05-2021 1:41pm

I used to get frozen to the core whenever I went swimming, purple lips and all, I'd take me ages and ages under a very hot shower to go back to normal. Horrid feeling. I should've checked my temperature to see what it was, just out of curiosity.

Galbin · 25-05-2021 8:40pm

My mam said for years that there had to be something wrong with me with how cold I was compared to her and other people. Yep, turns out she was right and it only took the doctor years to figure it out thanks to the useless TSH test.

I used to feel like there was something cold pressed against my back all the time. I now notice the same feeling if I miss a dose.

Hannibal_Smith · 25-05-2021 10:27pm

New Home there is nothing like a really hot shower! It's the only relief. I'd stay there all day if I could.

Do you remember the Ready Brekk ads Galbin.. With the red heat eminating from people? Well it's like that but it's an aura of blue ice! Like the central heating system has died :pac:

I'm assuming it'll all ease when I'm fully off the hyper tablets *fingers crossed*

Dempo1 · 25-05-2021 10:36pm

Hannibal_Smith wrote: »

New Home there is nothing like a really hot shower! It's the only relief. I'd stay there all day if I could.

Do you remember the Ready Brekk ads Galbin.. With the red heat eminating from people? Well it's like that but it's an aura of blue ice! Like the central heating system has died :pac:

I'm assuming it'll all ease when I'm fully off the hyper tablets *fingers crossed*

Ah, the memories

https://youtu.be/i1KUoS3mmvM

jrar · 25-05-2021 10:55pm

cee_jay wrote: »

I have read some conflicting information on when best to take Eltroxin - some have said to take first thing in the morning and avoid caffeine for an hour afterwards. Have you got a link to evidence on taking it at night please?
I am only taking it since December - beginning to feel like it is making a difference now though, due back for a blood test next month to see if it has helped.

Had Graves disease diagnosed in 1991 and was hyper-thyroid for 12 years when radio-iodine treatment was recommended because as soon as my neomercazole meds were reduced in any way, my readings would go through the roof again (it took years to balance the swings and get the dosage "right", and to eventually get me somewhat euthyroid via the perseverance of a great doctor in the Endo. dept in SJH at the time).

Radiation treatment was "too successful" and I went hypo with little of the gland continuing to function so am on Eltroxin since 2003. Always used to take my neomercazole first thing with a glass of juice at breakfast so continued this regime with the Eltroxin. Only discovered in recent years that it's supposed to be taken without food, but as I've never had a "reaction" to what I was doing, I just continued the same way - unintentionally I don't have coffee with my breakfast i.e. have my first cup mid-morning so cannot adjudge whether caffeine is an issue or not in terms of impacting on the medication's effectiveness.

New Home · 25-05-2021 11:13pm

Hannibal_Smith wrote: »

New Home there is nothing like a really hot shower! It's the only relief. I'd stay there all day if I could.

The bath tub is such a godsend, too. And hot water bottles. And hats... I could go on...

Hannibal_Smith wrote: »

Do you remember the Ready Brekk ads Galbin.. With the red heat eminating from people? Well it's like that but it's an aura of blue ice! Like the central heating system has died

Exactly! I wonder, was Elsa hypo, too. :pac:
The air conditioning in the office used to kill me, too. The sides of my upper arms, my thighs, by lower and upper back (not so much the middle, for some reason), ankles and wrists, and head are the most sensitive to cold for me.

Hannibal_Smith wrote: »

I'm assuming it'll all ease when I'm fully off the hyper tablets *fingers crossed*

Good luck, I hope it works for you.

Emme · 26-05-2021 3:07pm

jrar wrote: »

Had Graves disease diagnosed in 1991 and was hyper-thyroid for 12 years when radio-iodine treatment was recommended because as soon as my neomercazole meds were reduced in any way, my readings would go through the roof again (it took years to balance the swings and get the dosage "right", and to eventually get me somewhat euthyroid via the perseverance of a great doctor in the Endo. dept in SJH at the time).

Was that Dr Cullen? I attended him in 1997 for Graves Disease.

jrar · 28-05-2021 12:47pm

Emme wrote: »

Was that Dr Cullen? I attended him in 1997 for Graves Disease.

Yes, the one and same - I think he ultimately had the title "Professor" but he was an absolute gent and a great diagnostician ! I think he retired some years ago but continued to drop in to the Endo. dept in SJH and on one relatively recent occasion, just such an appearance happened to coincide with me being in for my annual 'check-up' and he made a point of coming to see how I'd been getting on all these years later !

rainbowmoose · 05-06-2021 11:22am

Hi all,
I posted earlier, anon by accident, but it's been lost somewhere to the approval gods so posting a brief version again..

Was just looking for advice whether this was worth following up on - I'm 30F and have been dealing with some hypothyroid symptoms for a few years (hair thinning, anxiety, stubborn weight gain, fatigue, etc.) which I feel have amped up the past 12 months (which I initially attributed to the pandemic) so I did a home full thyroid blood test.

The results were all normal range, apart from my Tgab which came back at 432UI/ml, almost 4 times the max normal range (0 - 115 ui/ml). So yeah, just wondering if it's something to follow up with my GP even though my t3 and t4 are normal?
Was just afraid they'd kind of fob me off due to that, but from what I understand, it means my antibodies may be attacking my thyroid and could lead to something in the long run?
Just learning about all of this from "Dr. Google" at the moment since I got the results..

Thanks!

Galbin · 09-06-2021 9:39pm

rainbowmoose wrote: »

The results were all normal range, apart from my Tgab which came back at 432UI/ml, almost 4 times the max normal range (0 - 115 ui/ml). So yeah, just wondering if it's something to follow up with my GP even though my t3 and t4 are normal?
Was just afraid they'd kind of fob me off due to that, but from what I understand, it means my antibodies may be attacking my thyroid and could lead to something in the long run?
Just learning about all of this from "Dr. Google" at the moment since I got the results..

Thanks!

When you say normal range, it is important to know where in range. There is a massive difference between a FT3 of 4.1 (bottom of the range) and a FT3 of 6.1 (top of the range). There is an entire school of thought out there perpetuated by some endos that antibodies are only a risk factor, but it seems more than coincidental that a person with high antibodies usually has a ton of hypothyroid symptoms just like you mention. Also, the main test used to diagnose hypo is unfortunately the TSH test and science is thankfully showing its flaws. They say it takes 17 years for findings to go from medical journals to doctors though, so it will still be used to rule out hypo for years to come.

If you have money to go private, I can recommend a few doctors. I originally went to an endo who thought that high antibodies and low FT3/low FT4 was enough to start thyroid treatment. Haven't looked back since.

Also, I have never understood the logic of ignoring antibodies anyhow. Like high BP is a risk factor for a stroke, but they don't wait until you have one to treat it. Similarly, high antibodies unfortunately means your thyroid is being attacked every day. So why wait?

Dempo1 · 09-06-2021 9:54pm

Quick question if I may. I'm currently on 3 monthly appointments with endocrinologist, unfortunately they are moved to telephone discussion because of Covid. Normally I get full bloods done with GP, they are sent off and Endo gets copy of results. Now with the cyber attack all blood work testing stopped, GP can not send bloods. My concern is not having bloods etc for endo appointment next week and I've not been great over the past few months, infact feeling awful at times. What will happen, working off last results won't be of any use? Strange one I know, do I just explain changes etc?

Hannibal_Smith · 10-06-2021 7:33am

Can you ring the endocrinologist dept or even their private secretary, explain and see can the organise for bloods to be done in the hospital?

Dempo1 · 10-06-2021 7:44am

Hannibal_Smith wrote: »

Can you ring the endocrinologist dept or even their private secretary, explain and see can the organise for bloods to be done in the hospital?

Morning and thank you. Unfortunately the Endocrinologist based at a Midlands Hospital, his clinic has not been operating face to face clinics for almost a year re covid, instead telephone consultations, all fine as my GP would do bloods in advance and copy him. Bloods are then sent to Mullingar for analysis, the problem is no bloods are being sent for analysis apart from extreme emergencies (I presume) because of the Cyber attack which continues to seriously impact certain services.

Martina1991 · 10-06-2021 7:10pm

Dempo1 wrote: »

Morning and thank you. Unfortunately the Endocrinologist based at a Midlands Hospital, his clinic has not been operating face to face clinics for almost a year re covid, instead telephone consultations, all fine as my GP would do bloods in advance and copy him. Bloods are then sent to Mullingar for analysis, the problem is no bloods are being sent for analysis apart from extreme emergencies (I presume) because of the Cyber attack which continues to seriously impact certain services.

Samples are meant to only be sent from GPs if they are critically important. However some GPs think the rules don't apply to them and take them anyway.

In our hospital, any GP samples we receive are sent to a private lab in Dublin. We don't have the staff capacity to process them as people are still very busy restoring data from the cyber attack.
This causes other issues like GPs ringing the lab looking for these results we have no access to. The private lab only sends back one hard copy of the results.

In our hospital, face to face consultant appointments are going ahead next week, and blood tests going ahead too.Things change every day, and every hospital may be different with what services they can provide.

I guess my point to you is, if your GP or endo makes enough of a fuss, then it can be arranged for you to have your blood tests processed. Your endo in the hospital would be you're best bet. Get them to contact the Biochemistry lab directly and they may accommodate you.

Dempo1 · 10-06-2021 7:34pm

Martina1991 wrote: »

Samples are meant to only be sent from GPs if they are critically important. However some GPs think the rules don't apply to them and take them anyway.

In our hospital, any GP samples we receive are sent to a private lab in Dublin. We don't have the staff capacity to process them as people are still very busy restoring data from the cyber attack.
This causes other issues like GPs ringing the lab looking for these results we have no access to. The private lab only sends back one hard copy of the results.

In our hospital, face to face consultant appointments are going ahead next week, and blood tests going ahead too.Things change every day, and every hospital may be different with what services they can provide.

I guess my point to you is, if your GP or endo makes enough of a fuss, then it can be arranged for you to have your blood tests processed. Your endo in the hospital would be you're best bet. Get them to contact the Biochemistry lab directly and they may accommodate you.

My query was primarily if the Endo can do an assessment with most recent results (over 4 months ago) as I've been having pronounced issues related to my disorder since last telephone consult. I certainly would not wish to be a burden, nor I believe would my GP. My bloods are normally sent to mullingar and this is the issue, I believe even if done in Endo"s hospital, they would be sent to mullingar. I've no doubt of the pressure hospitals are under generally, My GP explained immediately she couldn't send bloods and I understood.

So I'm going to go ahead with telephone consult and my Endo can determine urgency and order bloods be done at his hospital if needs be.

Thank you

snor · 22-06-2021 10:49am

Hi there. Can anyone please recommend a good endocrinologist in S. Dublin. Can go private. Hashinotos. Many thanks.

Dempo1 · 22-06-2021 11:10pm

snor wrote: »

Hi there. Can anyone please recommend a good endocrinologist in S. Dublin. Can go private. Hashinotos. Many thanks.

Hi there, hopefully someone might come back with some recommendations for you. I just wondered have you not been reffered or are you looking for new endocrinologist? Can your GP Help etc? My own is in Laois but I was reffered and thankfully he and his team excellent.

thyroid misery

Comments