thyroid misery

Dempo1

dinky earnshaw wrote: »

Hi folks,
My other half has been on nature thyroid for a couple of years with great results. She rang her pharmacist last week and apparently it is no longer available. He told her he would provide a similar medicine. Today he rang to say he couldn't source it but was still making enquiries.
Unfortunately shes on the verge of running out.
She's emailed her doctor and is awaiting a call back.
Have any of you had a similar experience or have any ideas where it or a replacement can be sourced ?

I just took a look at their website, you may want to take a look, it would seem following an FDA advisory, the product has been recalled? and may not be available for a while if at all.

https://www.naturethroid.com/

Galbin

Many people around the world have had issues with natural thyroid for a while now. There seems to be a manufacturing issue. As a result, people have switched to the equivalent dosage of T4 and T3. So for example, if your wife was on 3 grain on NTH, that is equivalent to 114 mcg of T4 and 27 mcg of T3, as each grain of NTH contains 38 mcg of T4 and 9 mcg of T3.

Hence people have been prescribed them in separates. Most are doing well with this way of doing it.

dinky earnshaw

Thanks for the replies much appreciated. Hopefully the doctor gets back to her soon.

Thingymebob

dinky earnshaw wrote: »

Hi folks,
My other half has been on nature thyroid for a couple of years with great results. She rang her pharmacist last week and apparently it is no longer available. He told her he would provide a similar medicine. Today he rang to say he couldn't source it but was still making enquiries.
Unfortunately shes on the verge of running out.
She's emailed her doctor and is awaiting a call back.
Have any of you had a similar experience or have any ideas where it or a replacement can be sourced ?

As @galbin mentions there was a manufacturing issue; in the randomised testing, the pills weren’t as strong as they should’ve been and replacement stock isn’t expected until March 2021.

I’ve been prescribed NP Throid before when there’s been a shortage and that’s what my latest prescription says. I don’t find it as good but have to get with it.

cltt97

Hi All,
I haven't posted in a long time... Have Hashimoto's and am taking Thybon and Armour thyroid. Have struggled for a very long time to get into the normal range, and in this regard actually feel ok. My current issue is that my eyes are killing me. Really dry. I've had dry eyes on and off over the years due to thyroid, but nothing like this. This has been going on for nearly 3 months now, and I can't live without eye drops day and night. The ophthalmologist said "you have dry eye" and prescribed steroid drops. I asked for connective tissue screen and RF to check for Sjogren's and they came back negative. I do get a sligthly dry mouth and sometimes a sore throat and also my sinuses sometimes feel dry, so I'm not sure I should rule Sjogren's out yet. I haven't had a lip biopsy, which I think is the next thing to check?. There is so little information out there, so I was hoping people here can let me have their feedback - do any of you experience this? Can anyone recommend a good rheumatologist who is familiar with this condition I could consult? Are there other tests I should consider? Many thanks for all your help.

inisfree0504

Hi all,

I recently had a full blood test done and it showed I am "veering" towards hypothyroidism (in the GPs words) with a TSH just within the upper normal range and a T4 just above low normal. She said it was just something to keep an eye on and that it wasn't necessary to make another appointment unless I develop more symptoms.

I am curious, however, about lifestyle/dietary changes I could make to support my thyroid function going forward as I'm only 24. I'm a bit overwhelmed with all the info online. Could anyone recommend any good books/websites that would give a good overview? Many thanks.

Galbin

The TSH range keeps being lowered, and long-term studies of large populations (such as the Hunt study) show that the ideal TSH is low in range. So, being near the top often isn't great. Do you have hypo symptoms such as easy weight gain, dry skin, digestive issues, depression, fatigue, or period problems?

Unfortunately, after having been around the block for 12 years, I have yet to see any alternative treatments that work for hypothyroidism. I have had amazing success with alternative treatments for a serious condition, so I am not knocking alternatives in general. I am just saying that when it comes to hypo I have yet to see any alternative therapies make any difference.

In terms of books the best books I would recommend are The Thyroid Patient's Handbook by Paul Robinson and Stop the Thyroid Madness by Janie Bowthorpe.

tamara25

Izabella Wents has 2 very good books on the thyroid. I have Hashimotos Protocol. I was very impressed with it. There is a strong connection between gluten any the thyroid. It was playing a big part in my hormonal issues. I was very skeptical about it but noticed a very noticeable improvement after 3 months. I can highly recommend a herbalist in Mayo but that might not suit you location wise. Dairy could be worth eliminating too for a while. You can always introduce again if you felt it made no difference cutting it out.

inisfree0504

Thanks for the suggestions! I'll check out the books. Low energy and low mood have been issues for me for years, but its entirely possible that they're unrelated to anything physical. That said, if it would be more appropriate for me to take a thyroid drug instead of the antidepressant I'm on, I'd much rather know. Symptom wise, I actually have really light periods, some hair thinning and, in the past few months, regular night sweats.

I wonder if there is any point in going back to the doc and getting a full thyroid screen as TSH and T4 were actually the only ones tested for (b vits and iron were ok). I haven't used iodized salt in about a decade and wonder if its possible I'm iodine deficient. I have a good diet, but its not particularly high in seafood and I am lactose intolerant so no dairy. The doc didn't seem overly concerned though, so I don't really want to overreact since my levels are still within normal range.

Galbin

inisfree0504 wrote: »

Thanks for the suggestions! I'll check out the books. Low energy and low mood have been issues for me for years, but its entirely possible that they're unrelated to anything physical. That said, if it would be more appropriate for me to take a thyroid drug instead of the antidepressant I'm on, I'd much rather know. Symptom wise, I actually have really light periods, some hair thinning and, in the past few months, regular night sweats.

I wonder if there is any point in going back to the doc and getting a full thyroid screen as TSH and T4 were actually the only ones tested for (b vits and iron were ok). I haven't used iodized salt in about a decade and wonder if its possible I'm iodine deficient. I have a good diet, but its not particularly high in seafood and I am lactose intolerant so no dairy. The doc didn't seem overly concerned though, so I don't really want to overreact since my levels are still within normal range.

It is extremely common for people to be put on ant-depressants for physical symptoms. So I would certainly be noting classic physical symptoms like fatigue and hair loss. Hair loss in particular is not caused by depression and is a classic thyroid symptom.

Also, your GP might not be able to give you the full panel, but you can actually order online. There is a great home blood testing company here that I use. Not sure if we are allowed to share such things on boards, so maybe pm me if you want the name.

Finally, we do not as of yet have *any* thyroid test yet developed that actually tests the amount of active thyroid that gains entry to the cell. Since T3 is actually produced within the cell, this test could tell us way more than even our current FT3 test does, but alas we do not as of yet have such a test. The most accurate measures are symptoms, FT3 (the only laboratory test that has been shown to track with symptoms in clinical research), and possibly antibodies. However, doctors are still going by outdated science and ignoring symptoms and testing FT4 and TSH only. It's not good enough.

TherapyBoy

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

i57dwun4yb1pt8

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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