thyroid misery

Deirdre66

Hi all

I am new to this thread and have been reading up on as many posts as possible.

I am 28 and I was recently diagonsed by my GP with underactive thyroid. I was feeling terrible at the time and was suffereing from severe fatigue and dizzy spells. Even at that I only went to the doctor because I had a cold i couldnt shake. I think I looked so terrible that she wanted to do blood test.

My first batch of blood tests revealed that my b12 and iron were very low. so i was put on a coarse of b12 injections -one every day for ten days and then one every month for 3 months. I also take iron tablets twice a day. I went back for blood tests and my b12 and iron were a little bit better but still low so i still take iron twice a day but only have to have my b12 injection once every 3 months. However that blood test also revealed that my TSH was high. I think it was around 21.

my GP has referred me to an endo and he also sent me for an ultrasound of my thyroid before my endo apt. I had the ultrasound on sat and GP rang yesterday to say that thinks it is ok but that there is a little bit of hypertension in the thryoid?? not to sure what this means.

Anyway my apt with the endo is next week and i was hoping some of you could help me out with the kinda questions i should be asking. From reading some of your post ppl havent had the best experience with endo's so i want to make sure i get everything i can out of the apt. My apt is in james connolly hospital dublin.

sorry for the long post!

cltt97

Hi there Deirdre, welcome to the club!
Generally, the problems with the endos only arise when one doesn't do well on the standard treatment... There are plenty of people who do perfectly well on Eltroxin and have no bother whatsoever, it's only when it doesn't work that life becomes difficult...

In any case, there are a number of things you should discuss with your endo. First of all you should get an antibody test (TPO -antibody test) to see if you're underactive thyroid is due to auto-immune disease. Then I would ask for a coeliac test (best way is to go for an endoscopy) - I am always thinking any type of aneamia, whether pernicious or iron deficiency based should be checked out properly to see if there are absorptive issues, so any digestive problems you have, make sure to mention them. The hypertension in your gland - never heard that before either, you sure he didn't say something about infiltration? that would indicate auto-immune disease.
Next thing to mention is that if you are indeed anaemic, thyroid supplementation could cause havoc (as in giving you heart palpitations and all sorts of other unpleasant symptoms) , if you PM me your email I can send you a scientific article on this issue that you could bring along to show the endo.
Very often there is also a vitamin D deficiency, so that should be checked, too. Some endos also put their patients on a high dose straight away, works for some, not so well for others, I almost keeled over, but I have sensitivity issues anyway. So my advice always is don't start higher than 50 and never increase by more than 25. Most people take about 100-125. The norm is to stay on one dose for 6 weeks and then get bloods done, and that continues until the levels are back in normal - the best indicators being Free T4 and Free T3, the latter is very rarely tested though...
That's all I can think of for the time being, I'm sure others will add to it. Good luck and let us know how you get on, good endos are hard to come by and we all benefit from sharing experiences!

cltt97

SarahH2O wrote: »

Would love to get some recommendations for a good endo in Dublin too if anyone could help. Have hypothyroid symptoms,high TPO antibodies and multinodular goitre but was told by endo that not a thyroid problem.Also have low ferritin,5 on last test despite a year of iron supplements.

Hi Sarah, what about your B12 and folate, are they also low? What's the rest of your iron profile like? I am no expert when it comes to anaemia, but I think it's hard enough to get iron levels up, but it also depends on the type of iron supplement and the daily dose and presence/absence of absorptive issues. So when your doc says you don't have a thyroid problem - are your TSH etc in the normal range or something? Otherwise that would make no sense....

LegacyUser

Hi, I posted here before under the username of SadThyroid

I've been back to the doctor to have my six month check up. I mentioned that there was some evidence that a low dose of eltroxin has been shown to reduce antibodies in people who are euthyroid, and suggested I might benefit. She was quite adamant that an endocrinologist had recently visited and hadn't mentioned this

Has anyone heard of this?? Do some doctors treat this way??

She's also told me I physically have none of the symptoms of thyroid disease, and is convinced I have depression. She's agreed to do thyroid tests, and I asked her to do the coeliac test because it runs in my family, but she's adamant my thyroid is fine. And is making me fill out a mood diary and bring it back to her

I'm exhausted and quite teary, but I don't think I'm depressed.

Previous readings were t4 15.4, antibodies >1000, tsh 4.8

Deirdre66

cltt97 wrote: »

The hypertension in your gland - never heard that before either, you sure he didn't say something about infiltration? that would indicate auto-immune disease.

I think he said hypertension but couldnt be 100% sure. he is sending out the results so should have them by tmoro.

I havent the results of my blood tests on me but I think in the first round of tests my white blood count was down too.

At this stage I just want to get the right treatment. The b12 injections and iron tablets brought those levels back up but I still felt just as bad if not worse...the GP did start me on eltroxin but only for a month. he didnt want to prescribe anythin more because i am going to see the specialist. I cant say that i really noticed any difference. I was still wrecked all the time. I am gettin more headaches as well. Does any one else get a headache behind their eyes? this generally happens to me behind one eye at a time! i have also notcied problems with my ears. every now and then i notice i cant hear aswell as usual and i realise my ears need to be popped again. on a bad day this can happen up to 5 or 6 times. i have had my ears checked and there is no problem with them. just wondering is this possibly another weird symptom relating to underactive thyroid?

robinph

I found that I was feeling a lot worse initially after starting on the thyroid meds, took about 6 weeks before I felt things were better. Although I think it's got worse again now, I'm waiting on another blood test result at the moment.

The GP had just said to me after the first blood test since starting on the meds, "You're fine now, come back for another blood test in a year". At that point I still felt like crap. Was in to get a HbA1C test for my diabetes last week so I just said to the nurse taking the blood that the doctor had asked for another TSH as well and she believed me and took for that as well. Will give them a call again tomorrow to see if they have the results, but it feels a bit odd to actually be hoping for a bad number to come back.

SarahH2O

cltt97 wrote: »

Hi Sarah, what about your B12 and folate, are they also low? What's the rest of your iron profile like? I am no expert when it comes to anaemia, but I think it's hard enough to get iron levels up, but it also depends on the type of iron supplement and the daily dose and presence/absence of absorptive issues. So when your doc says you don't have a thyroid problem - are your TSH etc in the normal range or something? Otherwise that would make no sense....

Hi C,
Have pernicious anaemia and am on B12 injections once a month for over a year and my levels have doubled to 260 in that time.Folate on the low end of normal.I have been tested for coeliac but it was negative.My iron is also low,never above10.5.TSH was normal at time of appointment (though had been high on the prior test to that) but had since gone up to 5.5 and is due to be tested again soon.

sam34

redcatstar, as per the charter and boards general policy please don't give out names and numbers publically


cltt97, please don't make comments or suggestions about the dose people should be on. that crosses the medical advice line.

Deirdre66

Hi

Further to my last post i was hoping someone could help me understand my blood test results as GP didnt really explain.

First test:

Free T4: 17
Ferritin:59
TSH:2.84
B12:125
Iron Studies:
TIBC-46
Iron-6
TS-13
UIBC -40


Second Test:

Free T4:9.1
Ferritin:55
TSH:20.74
B12:280

Not sure if there is anything else that is relevant here?

Thanks

Wyldwood

Deirdre66, I don't know what the timescale between the two tests was but you have gone from within normal range to very underactive (hypo). I can't comment on iron profile results as I'm not familiar with ranges. I suggest you ask your gp for printouts of your tests so you can see the ranges your lab applies, it varies from lab to lab. Normal range for TSH is 0.4 - 4, at 20.75 you're thyroid function is very low so pituitary is pumping out a lot of hormone to try to compensate. Free T4 should be in the range 12 -22 so you've gone out of range there also. I think your endo will probably run some further tests to see if something else is going on. Have a read back over this thread, there's lots of info on the various tests that can be done & quiz your endo about them.

robinph

Just had the results of my TSH back and it is unfortunately exactly the same as the last one at 2.1 so well within the range despite me still not feeling the best. Better than I was but still, should be better.

Deirdre66

Wyldwood wrote: »

Deirdre66, I don't know what the timescale between the two tests was but you have gone from within normal range to very underactive (hypo). I can't comment on iron profile results as I'm not familiar with ranges.

The gap was only 3 months between tests.

The iron was very low. normal range apparently is around 90 and mine was 6.

I presume they will run more tests. i am just worried that if the tsh jumps back into normal range that they will dismiss the other test?

Wyldwood

to Robinph: I'm guessing you're feeling hypo symptoms. When my TSH is in range I get hyper symptoms so my endo is happy for me to be somewhere around 5 - 5.5. Perhaps discuss this with your doc and see if a slight adjustment of meds will make you feel better, don't do this without medical supervision the last thing you want is to go hyper, that's not a nice experience.

to Deirdre66: your low iron could be a cause of some of your symptoms so I'd work on raising that. I don't know what lab your results are from but CUH use a range of 4 - 26 umol/L as normal. The printout from your gp will show ranges so worth getting. If you've been prescribed Eltroxin for thyroid & the results are normal next bloods then you are responding. It can take weeks for the meds to have full effect. Thyroid can be very difficult to control for some but others feel better quickly so hang in there and discuss all options with doc.

Corruptedmorals

Deirdre66 wrote: »

The gap was only 3 months between tests.

The iron was very low. normal range apparently is around 90 and mine was 6.

I presume they will run more tests. i am just worried that if the tsh jumps back into normal range that they will dismiss the other test?

Normal starts at 20. Under 13 is anaemic. The range is 20-300. This is what my doctor says, the surgery uses St. James' labs.

cltt97

Deirdre,

Your B12 was below range in the first test but is fine in the second. You ferritin is in range (20-300) the other iron reference ranges are

IRON STUDIES
Iron, plasma M 14-31 μmol/L F 10-30 μmol/L
TIBC, plasma 50-80 μmol/L
Transferrin Saturation, plasma M 20-50% F 15-50%

So you are below all these - would ask for full blood count which amongst others contains the following:

HB (Haemoglobin)
HCT (Haematocrit)
MCV (Mean Cell Volume)
MCH (Mean Cell Haemoglobin)
MCHC (Mean Cell Haemoglobin concentration)


Read up on what these all are here http://www.nlm.nih.gov/medlineplus/ency/article/000584.htm

This will help to establish what type of anaemia you are suffering from.

Your TSH is high, but your T4 is just about at the very bottom of normal.

Have you had folate tested as well? Would check Vitamin D, too.

Again, no expert, but I think improving iron status can take a good while, so my guess would be that you need to keep up on those iron tablets for a while. Also remember not to take them anywhere near the time you're taking the thyroid tabs.

redcatstar

hi cltt97 going to check out the thread you pasted ,if you remember my bloods were
HB 12.3
FERRTIN 6.3
TIBC IS OBVISOULY TOTAL IRON BLOOD COUNT MINE WAS 5.9[JUST LOOKED AT ARTICLE IT MEANS TOTAL IRON BINDING COUNT, any idea what total iron count is, none of the professionals will tell me]
RED AND WHITE CELLS I WAS TOLD WERE FINE ALSO B12 AND LIVER PROFILES
BUT MY
TSH GONE UP TO 5.89
T4 12.8
THANK YOU FOR ALL YOUR HELP:)

cltt97

The refernce dose for HB (Haemoglobin) g/dl 11.5-16.4, so you're just in there.
TIBC is total iron binding capacity, not sure what total iron count is to be honest. what hospital did the blood analysis? If I had to take an educated guess I would think it refers to serum iron, but I don't really know....

redcatstar

cltt97 wrote: »

The refernce dose for HB (Haemoglobin) g/dl 11.5-16.4, so you're just in there.
TIBC is total iron binding capacity, not sure what total iron count is to be honest. what hospital did the blood analysis? If I had to take an educated guess I would think it refers to serum iron, but I don't really know....

thanks,
nurse in my practise hadn't a clue ,have friend returning to work in hospital lab in 2 wks, will ask her and let you know

sam34

ok folks, can ye ease off on interpreting other peoples results please.

RubyGirl

Got my bloods taken again today and asked the nurse would she take for vitiman d which she did.

She said the results would take up to a month to come back, why is this does anyone know? She did'nt?

Deirdre66

Well got ultrasound back which says gland is of normal size and shape. No convincing nodules but gland is hypervascular.

Anyone else have a hypervascular gland or know what it means?

In relation to the iron the doctor said I was dangerously low and no wonder I felt so bad. They used James lab aswell.

I did get a full blood count done at the time aswell which was ok bar White blood count was low.

Meeting the endo on Monday so hopefully that will go well.

redcatstar

Deirdre66 wrote: »

Well got ultrasound back which says gland is of normal size and shape. No convincing nodules but gland is hypervascular.

Anyone else have a hypervascular gland or know what it means?

In relation to the iron the doctor said I was dangerously low and no wonder I felt so bad. They used James lab aswell.

I did get a full blood count done at the time aswell which was ok bar White blood count was low.

Meeting the endo on Monday so hopefully that will go well.

good luck on monday with endo

Corruptedmorals

RubyGirl wrote: »

Got my bloods taken again today and asked the nurse would she take for vitiman d which she did.

She said the results would take up to a month to come back, why is this does anyone know? She did'nt?

I have heard it is because samples are batched together and then tested, so the length of time it takes to get the amount for the batch is the issue and why really common tests like thyroid and cholesterol are really fast with results and why less common tests are comparatively slow. A month does sound excessively long though- perhaps a backlog somewhere?

In Boots in Dublin city centre yesterday they were out of 100's and 50's of eltroxin and had to give all 25's instead. I hope they weren't out of 200's as well...making up a 250 dose with 25's would be a nightmare. Anyway I had heard that there was a shortage but it must be fairly widespread.

Blingy

Have gone to two chemists recently to get eltroxin and one didn't have any and the other only had one months worth.
Anyone know of anywhere with good supply in Dublin city?
Taking 150 a day. Thanks.

Wyldwood

There seems to be a supply problem with Eltroxin, I couldn't get 25s recently and ended up halving 50s. last year 100s were in short supply so had to take 2 50s.
Going through a bad patch at the moment again. Was doing OK on 25mcg daily but endo wanted 25/50 alternate days to bring me down from 7.7 & cardiologist added in beta blocker to prevent palps etc. After 2 weeks of that I got very hyper symptoms again - jittery, tight chest, running to the loo. Had to come off everything for a few days to calm things down but still feel unwell. Going to go back on 25 daily for a few weeks and get bloods done again to see where I'm at. I'm despairing at this stage of ever being well again.

Corruptedmorals

Wyldwood wrote: »

There seems to be a supply problem with Eltroxin, I couldn't get 25s recently and ended up halving 50s. last year 100s were in short supply so had to take 2 50s.
Going through a bad patch at the moment again. Was doing OK on 25mcg daily but endo wanted 25/50 alternate days to bring me down from 7.7 & cardiologist added in beta blocker to prevent palps etc. After 2 weeks of that I got very hyper symptoms again - jittery, tight chest, running to the loo. Had to come off everything for a few days to calm things down but still feel unwell. Going to go back on 25 daily for a few weeks and get bloods done again to see where I'm at. I'm despairing at this stage of ever being well again.

Boots St. Stephen's Green have 25's if that's any use to you. Maybe ring up a few pharmacies near you to check next time? Halving them must be a right pain!

LegacyUser

About two years ago or so I started suffering from joint pain. I got my bloods taken last yearfor it. First one came back inclusive so had to go again. I didn't ring for the second results. I just pursumed they my doctor would contact me if there was anything wrong. Arthritis runs in the family.

So that's that. A lot of symptoms in this thread match a lot of what I go through - body aches and pains, tiredness, weight gain (during the past year I put on a lot of weight and I look pregnant), heavy sore periods, nausea. I must admit my diet isn't very good with a lack of appetite.

Something else which came about last year was a depression. And anxiety. Something that seems so small tipped over an edge and it just doesn't make sense. This isn't me. A very down, gloomy, nothingness feeling. I am familiar with so much from the depression thread and this thread too. I have not been diagnosed with depression because I have not been to the doctor so it is untreated. My mood was up and down during the past couple of months and right now it ok. Not bad. Not good. Ok. I also have anxiety and worry.

I went to visit a tarot reader recently and she sensed thyroid problems and reading this thread it fits into place but I suppose nobody will no until I get it checked. She stressed a few times to get it checked.

So how do I get this done? Do I go to my gp, explain my symptoms, and he decides. Or could I phone to make an appointment with the nurse for a blood test for testing thyroid? If I had problems with my thyroid would it have been picked up in last years tests?

Deepsurf

Hi I'm a newbie here and I've been reading most of your posts. March 2011 I was diagnosed with thyroid cancer and had two operations to remove thyroid. The second operation my para-thyroid glands were damaged. So not only am i taking Eltroxin but also Vit D and Calcium. I've been trying to get my thyroxine levels right but have hyper symptoms so am reducing my dose for the second time. I'm beginning to realise now when I need my meds adjusted. It's a pain though when you think you've got it all sorted and then you're all over the place again. I get this horrible head-rush. It's like someone is turning the volume up and down in my head. It's really hard to explain but it's not very pleasant. I also get stomach cramps. My GP is looking after all this as I don't have an appointment with my Endo for another few months.

In fact the last time I was at the Endo, she only gave me a blood test form to check whether I have any thyroid gland (thyroglubulin). I asked at the time was she not giving me a form to get my tsh levels or calcium levels checked and she said no! - Em, is that not the reason I'm attend an Endo?

Would love to hear from any of you.

treecreeper

am off to hospital tomorrow and wondered what you guys ask for when you wish for blood testing? i have hypothyroidism but also autoimmune diseases coming out of my ears, will be asking for my lupus screen again as my ANA was double what it should be, my sjogrens has flared and i am started a five day course of low dose steroids...a mess

Wyldwood

Welcome to the forum both of you.
Deepsurf, It can take a while to find the right level of hormone replacement, unfortunately, & it really is trial & error (lots of "error" for some of us). The symptoms of hyper are very nasty indeed. I get funny head sensations too & bowel problems are also common, heart symptoms are the worst. The usefulness of attending an endo is questionable, some are very good & helpful others not. Seems like the luck of the draw. A good gp can be just as productive. Get copies of all your blood tests to compare as you go along, note the ranges used by the lab & you'll soon see where your numbers should be when you're feeling well.

Treecreeper, I don't have other autoimmune problems but as regards the thyroid tests if you read through this thread there's lots of very good info on the various tests that can be done. I presume you've been checked for antibodies (Hashimoto's), coeliac, cortisol for adrenals. The usual tests, TSH, FreeT4 & Free T3 (you will have to request this) are the routine ones. As I said to Deepsurf get copies of results.

Stick around this thread as there are some very knowledgeable, helpful people on here.