Am I falling apart

After eventually getting diagnosed with Hashimoto's my doctors have decided that, as my TSH isn't high enough to give me symptoms, I have Fibromyalgia which they want to put me on amitriptyline (unfortunately as one of my Ecg's came back with a slight problem they are waiting for advice from a cardiologist to make sure this medication is safe for me) and now after recording peak flow readings for my breathing troubles they think I may have asthma too. I think I may be falling apart as everything seems to be wrong with me when I've always been pretty bomb proof!

My next bloods are due to be taken in a fortnight so here's hoping they're ok now I'm up to 100 microgramms of Thyroxine, I still feel rubbish but I know it takes quite a while for the symptoms to get better as I think I must have had them creeping up on me for years.

Thanks for all your help, I seem to get much better advice on here than anywhere else.

20 Replies

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  • Make sure your FT3 is tested when you have your next bloods. If your T4/Levo 100mcg is not converting into the ACTIVE thyroid hormone T3 - your symptoms will persist. So if they don't test it how can they say your symptoms are not thyroid related. Many people have a problem converting and some people have the D102 gene which prevents this happening. Few Docs are aware. Information on the main Thyroid UK website.

    Di you have your B12 - Ferritin - Folate - Iron - VitD tested ? I believe it was suggested in your last thread. They all need to be OPTIMAL for you to feel well and for the Levo to convert into T3. Do not accept Normal - that is an opinion and NOT a result. Obtain copies of all your test results with ranges - post here in a new thread and people with comment :-)

    Have you had thyroid anti-bodies tested ? - Anti-TPO - and Anti-Tg. Hashimotos needs to be ruled out. Your symptoms - in my non medical opinion seem related to inadequate thyroid treatment. I was once diagnosed with Fibro some 15 years ago. My Hashimotos was diagnosed in 2005 - and I am now so much better - with optimal thyroid treatment and having optimal levels of the nutrients mentioned above.

    Do hope you soon feel better........

  • My antibodies were >1300 so Hashimoto's has definitely been diagnosed. My last results were Free T3 4.5 (3.5-6.5), Free T4 11.3 (11-23) and TSH 3.35 (0.35-4.5) but I have asked for them to test B12 etc. when they test my Thyroid in a couple of weeks even though my doctor was reluctant as she said I am absorbing nutrients otherwise I would have tested positive for coeliac and my ferretin and Vit D were in range.

  • ...apologies CABDutch - I missed the Hashimotos bit in your first post :-) Your T4 is at the bottom of the range and the FT3 needs to be much higher. TSH needs to be around 1 for you to feel well.

    How could your Doc possibly know if you are absorbing your B12 - it is a very complicated mechanism and the test is only a guide. Only 20% of the serum B12 test is available to be transported to the cells where it is needed - something Docs fail to know when looking at test results.

    Good to hear that Ferritin and D were in range - but where in the range were they ? Ferritin usually needs to be around 80/90 and D at the top of the range.

    Hope your tests go well.....

  • Any mention I make of my symptoms being Thyroid related to my Doctor is met with a roll of the eyes. Vitamin D is 68nmol/L (>50) as I was supplemented for it being low back in March. Ferritin in range at 24ug/L (22-332). Clutter has suggested I supplement these so when I get tested (that's presuming they test for what I have asked) I will look into the cost of supplementing. I have a lack of funds due to being self employed and feeling quite unwell.

  • 24 ferritin is way, way, way too low and might be linked to some malabsorption issue, or dietary restriction, or heavy periods.... is there an obvious reason why you would have low iron stores?

    Iron tablets are pretty cheap, but you could also up your intake of things like black pudding.

  • I do have Endometriosis so in turn I have heavy periods but I've had the Mirena IUD (suggested for helping with the Endo symptoms) for the last year so very light periods while that was in but I had it removed a while ago as it didn't work for me so I've only had a few heavy periods since.

    As far as diet goes it is well balanced, we grow our own veg, keep chickens etc. and I eat red meat so I'm sure I get plenty of iron in my diet.

  • Heavy painful periods are another symptom of hypo thyroid. God, I hate doctors. How can you possibly be diagnosed with Hashi's and not be treated. Think you need another doc who is more sympathetic.

    Jo xx

  • Believe me this doc is an improvement (if only slightly) on my previous doc who said I definitely didn't have a problem with my thyroid with a TSH of 7.26 and my antibodies of >1300 were irrelevant and kept telling me to take another antidepressant!

  • Chickens! Me too. Delightful though ruthless creatures.

    So since we have to diagnose and cure ourselves, the next thing to investigate/exclude to account for the low iron stores is absorption. Celiac is ticked off. Do you have any symptoms of gut problems? Bloating, that kind of thing?

  • Not really any gut problems, I do have a bit of bloating and pain in my lower belly but that's always been put down to Endometriosis (that's a whole other story, last ultrasound I had couldn't find one of my ovaries and the other was in the centre, you're guess is as good as mine on this one, my Doc said "that's slightly unusual"). I've had a Barium swallow which didn't pick up any acid reflux despite doc telling me I probably have it as I'm overweight). So there's nothing of note really in the gut department.

    I do feel that there must be some sort of malabsorption as I was supplemented for Vit D back in March and I spend most of my life outdoors. I know we don't get much sunshine in the uk but I hate being indoors so I'm out in it walking the dog for 2-3 hours a day every day without fail.

  • You may not have acid reflux but you could have too little acid in your stomach, common in hypothyroidism although symptoms the same.

    sott.net/article/265343-The...

    modernherbalist.com/betaine...

  • Your VitD is VERY Low - so you need to be taking at least 3000 IU's daily. I would definitely try supplementing to raise the Ferritin levels. When levels are low the conversion from T4 into the Active T3 is poor.

    grassrootshealth.net

    The above link takes you to a chart of dosing VitD according to your results. The measurement is ng/L - so divide your result by 2.5 to be the same. I make yours around 27 - so lets say 30 ! Both D and iron supplements are inexpensive. What price health ? I am retired so do appreciate having to make the pennies stretch :-)

  • Well, that's a very odd idea isn't it, that only celiac disease would cause malabsorption? When you probably have achlorydia from the hypo, and could well have autoimmune atrophic gastritis, for all she knows, or SIBO (small intestinal bacterial overgrowth) all of which seem to be associated with hypo.

    Have you got print outs for "within range" ferritin and D giving your actual levels?

  • There's also microscopic colitis, which can cause malabsorption as the lining of the colon gets too thick (for different reasons). But you need a biopsy to confirm it.

  • CABdutch, I had severe fibro pain, shortness of breath, palpitations, tremors etc. etc. Problems were due to intolerance to Levothyroxine on it's own and low FT3. The addition of T3 not only raised FT3 to sensible levels but it also calmed the adverse effects Levothyroxine only caused.

  • They talk a lot of rubbish about the TSH not reaching a point to give you symptoms. In fact with hashimotos they should prescribe if patient has hashis never mind where the TSH is.

    They should add some T3 for your fibromyalgia. Not Amytriptyline. T3 has no side effects other than if you take far too much. It is a thyroid hormone required by our bodies in the billions of receptor cells. If you also have fibro there is a great possibility it would also improve with T3 as fibro is usually due to some 'thyroid hormone resistance' which causes pain and I'll give you a link.

    These archived links are by a doctor who ran Thyroidscience.com, Fibromyalgia Research Foundation as well as Dr Lowe.com. Unfortunately he died two years ago and was also an Adviser to Thyroiduk.org.uk

    Read the question/answer dated September 24, 2002

    web.archive.org/web/2010103...

    web.archive.org/web/2010103...

    web.archive.org/web/2010103...

  • Thank you so much yet again, if only I was able to get my Doctor to listen to me and not look at me like I'm an idiot. If you could all just come with me to my next appointment that would be great!

  • You need good level of acidity in stomach to uptake your Levo.

    You might find taking Liquid Vit C just before your Levo helps improve absorption.

    endocrine.org/news-room/pre...

  • I wonder whether taking betaine with the levo might help? Anyone tried that?

    Ovary in the middle. Hmmm. The ancient Greeks had a theory about wandering wombs, didn't they. Maybe you have classical ovaries.

    It is possible that the stomach bloating might be linked to SIBO though, just possible, not just the endometriosis.

    Do you take betaine with meals? S I've started taking two betaine with every meal (washed down with orange juice because I hate them) and I think it is helping. But I may just be deluded.

  • I was diagnosed with Fibro a while after being diagnosed with Hypothyroidism and later Hashimotos. I was prescribed amitryptaline by my doctor which i took a couple of times but im afraid it was no good for me as getting up early every day for work and driving were not compatible even though i was only on a low dose (10mcg per day), also this drug is difficult to come off once you are on it for any length of time so in my personal opinion i would say it helps with the aches and pains and to get a good nights sleep but it affected my functionality the next day, i can say however that an increase in levothyroxine also helped with the aches and pains but im nowhere near where i would like to be with how i feel.

    Hope this helps in some way.

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