Always exhausted

I was diagnosed with Fibromyalgia ten years ago after two years of constant pain and tiredness, sore throats, hoarse voice etc etc. Until the summer of last year, I survived - but with a much-changed lifestyle - taking the pain killer Meloxicam, Omeprazole to counter its effects, Duloxetine for depression and Amitriptyline to sleep and help with night pains. I take a daily multivitamin.

I then discovered Dr Skinner who diagnosed me with no hesitation (I ticked over 90% of the items on his symptom sheet) as hypothyroid. I miss him dreadfully. I have been on Levothyroxine since first seeing him in July 2013, against the wishes of my GP. Dr Skinner gradually increased my dose of Levo to 100 mcg, which I am on now, again against the wishes of my GP. I am getting less joint and muscle pain - and asthma - and have halved my dose of Meloxicam to 7.5g, but feel constantly exhausted. I need to sleep 12 hours a night and still wake feeling tired. If I go to my GP, he will just tell me I should not be taking levo at all. I eat a wheat, gluten and dairy-free diet. My husband described me yesterday as bed-ridden and I just felt, for his sake at least, that I needed to try and sort this out!

I had some blood tests done in January 2014 by a very unsympathetic endo and asked my surgery for the T4 and TSH to be repeated in June, plus T3, which amazingly they did. Here are the results (all Jan 2014 except where stated):

Iron:15.8 (10-28 umol/L)

Transferrin: 2.50 (2-4 g/L)

Transferrin Sat %: 24

Vit B12: 416 (180-2000 ng/L)

Serum Folate: 16.4 (2.8-20 ug/L)

TSH: 0.71 (Jan) 0.05 (June) (0.2-4.5 mU/L)

Free T4: 12 (Jan) 14 (June) (9-21 pmol/L)

Total T3 : (June) 1.5 (0.9-2.4 nmol/L)

Cortisol: 211 - 539 (nmol/L) over half an hour

250H VitD imm'assay: 72 (nmol/L)

Anti-tTG Iga (DS2): 0.40 (0.1-5.0U/mL)

Please could I have some views on these? Nobody has gone through them with me, except say they are normal apart from the June TSH.

Also: I don't know whether the multivitamins I am taking (Waitrose Love Life A-Z Multivitamins and Minerals are good enough; they only have 27% RDA of magnesium, for example; otherwise most are 100%.

I also do not know if I should increase my Levo from 100mcg to 125 mcg or, if am not converting T4 to inadequately, should I try T3? if so, please could someone PM me with the details of how to source?

Sorry this is such a long post but without Dr Skinner and a sympathetic GP, I feel a bit lost!

33 Replies

  • I wish I could help you, I don't understand these either, how awful for you not to have your dr to help you!

    I hope someone here can support you and help you through this.

    Hugs! xoxoox Jenny

  • Thanks, Jenny x

  • Hi - I will leave other more knowledgeable people to interpret your blood results but someone with Rheumatoid Arthritis and Hypothyroidism (I have both too) told me the other day that anti-inflammatories should be avoided with Levothyroxine. I had never heard this before and am regularly prescribed both.

    If you still have pain around your joints then you should go back to your GP and ask them to check your autoantibodies and your inflammatory markers. You may need to push hard and be tough with them if they are difficult about this. Being bed ridden is no joke and you need taking seriously. Maybe change GPs if you can?

  • Thanks Twitchytoes! I will try!

    I changed my GP practice after 6 years there last year (not just because of their lack of interest but also because of staff shortages/problems). I had high hopes of the new practice but, although a locum gave me one prescription of levo at the start after a letter from Dr Skinner, I was then called in by the head of the practice who told me that he had instructed all the other doctors that they were not to prescribe it to me because of the dangers (heart problems and osteoporosis). I was perhaps too conciliatory, but I did ask if they would prescribe if I signed a letter saying I was aware of the risks. Still no. x

  • Your T4 is low so am assuming the FT3 is too - which may explain many of your symptoms. I see the result is for Total T3 and I am not familiar with that test - only the Free T3. Others will come long and help. I cannot see the Anti-TPO result which may confirm a Hashimotos diagnosis - auto-immune thyroiditis. Often auto-immune issues come in pairs - or more :-(

    Increasing T4 is good in some ways - but only if you are converting into T3.

    Your B12 is reasonable on paper - but there will be some B12 in the Multi-Vit. Only 20% of that result will reach your cells where it is needed. Multi Vits rarely give you enough of anything - they are fine if you are a fit person for maintenance but with on going conditions it is better to take the things you need. To prevent cognitive decline results need to be around 1000 with B12

    Your VitD is good - are you supplementing ? If so keep on !

    We are of course all individuals - I have Crohns and Hashimotos - so take Selenium 200mcg with ACEand D - VitC 2000mcg - Magnesium which needs Zinc to keep the balance - B-complex - Nutri-Thyroid - Thyro-Complex - VitD 10,000iu's daily and weekly B12 injections...there's probably something I have forgotten.

    Listening to the Hashimotos Institute on-line summit ( still available for FREE ) I am reminded yet again that we have to address diet and lifestyle to be well - and gluten free heads the list.

    I have had a long and bumpy journey over the last 50 years and through learning from people here who point you towards good information and research - I am at last feeling better. Still overweight but fitter and more energised. I am now T3 only ....but am concerned from time to time I may need some T4 :-)

    Hopefully someone will be along soon with more info about your blood results....

    You are having a difficult time - but there are so many people here with lots of good advice.

    Taking medication can also complicate things - is omeprazole for reducing stomach acid ? -

    Happy reading !

  • Thanks very much. I do have another auto-immune disease: lichen sclerosis. I do not have rheumatoid arthritis but my grandmother suffered from it. I have stopped taking omeprazole now, thanks to information about it on this site.

  • I certainly agree with the last post about going gluten free. It didn't cure me but I do now have an awful lot more energy and almost no fatigue. I dithered about doing it for years, then decided to just do 3 days. So if it feels like just another battle then just try it for a few days and see how you feel. You may just feel the difference straight away. Good luck.

  • Thanks. I do find gluten free helps.

  • Why are GPs such idiots (rhetorical question). Fibromyalgia isn't something you "diagnose" anymore than a "headache". It's a symptom and the doctor's job should be to find out what is causing it. Mostly it's caused by thyroid and/or adrenal problems.

    I'd start by ordering the saliva cortisol test from Genova UK

    Hypoadrenalism goes hand in hand with hypothyroidism and, for me at least, is what causes fibro type pains.

    Your FT4 isn't high in range, yet your TSH is low, so I would guess that your pituitary doesn't work to full effect, which makes it even more likely that you have adrenal issues as well.

    Have you considered trying something like Nutri thyroid in addition to your levo? This is a weaker form of Natural Dessicated Thyroid and it's what I take along with thyroxine.

  • Many thanks. Very helpful. I had been wondering about ordering the saliva cortisol test and will now do so. I presume I can find Nutri thryoid fairly easily?

  • If you PM me I can tell you where to get NT at a discount. But it's easily available online.

  • If taking Thyroxine helped you symptoms, then looking at your FT4 levels I would say you could increase your Thyroxine to 125mcg. So long as you have acquainted yourself with the symptoms of being over medicated you shouldn't have a problem. If it was me I would experiment with taking as little of the other medication as possible. For example the antidepressants may be less necessary if the thyroxine stops you being depressed (which it often does). It is worth googling to see whether any of your drugs are interacting with eachother in an unhelpful way as twitchytoes suggests, and reading up on the side effects. I find I sleep more deeply on a higher dose of Thyroxine - I have heard that some medication that 'helps you sleep' doesn't always make you feel less tired. I have never tried T3 so I won't comment on that - maybe someone else will.

  • Thanks very much.

  • Fibromyalgia is just poorly treated under active thyroid.

  • It really amazes me that doctors are unable to take the clinical symptoms of hypothyroidism and diagnose the patients as Dr Skinner and doctors like him did. Patients clinical symptoms priority and blood tests as a tool. In actual fact the blood tests are only 'reference ranges' not 'normal' which word has been substituted so that we are all now 'normal' whether or not we feel anything but normal health.

    This is a link and personally, I think an addition of some T3 will help you as Dr Lowe (another fine doctor who died two years ago and is missed too) used it for his fibromyalgia patients and he was also Director of Fibromyalgia Research.

    It would appear you will have to go it alone and recover your health. When you have your blood tests do not take medication on the morning of it and have it as early as possible..

    (see what he says about amytriptyline).

    If you are hypothyroid you will most probably have low acid rather than high and you may need acid i.e. HCL (hydrocholoric acid). The symptoms of high and low are so similar they doctors don't think 'low'.

    We have to practically take a degree and absorb (if that's possible with 'brain fog') info in order to get well.

    So, today is the first day of your new 'get well' regime.

  • That is all very helpful..I have printed off the articles and will try and get to grips with you say you practically need a degree in all this!

  • In fact we will know more than the majority of doctors which is a pity as they used to know and recognise that the patient/s had clinical symptoms and they medicated accordingly. Now they diagnose by a dot on a piece of paper and ignore how bad we feel and give us medication for the symptoms rather than a decent dose of thyroid medication.

  • A couple of links:

    The one below has had awards for its supplies.

    You can also order items from Amazon and if you use the Thyroiduk link they get a small commission.

    Vitamin B12 supplement has to be methylcobalamin and you can get spray or sublingual tablets which by-pass stomach. You should be aiming towards the upper range. Excess is excreted in urine.

  • Thanks very much for all those useful links.

  • I believe that as well ! But doctors are so unhelpful mine is gradually reducing my Levothyroxine (blood test shows my levels to high) each time I felt worse.

  • Then refuse to accept the reduction! A doctor is not your lord and master. He can suggest changes but you are not obliged to accept them. Just put your foot down and say no! That's what I do.

    Hugs, Grey

  • Email and ask for a copy of Dr Toft's Pulse Online article. Question 6 you should refer to and you will see what your GP should be aiming for and also you can have a suppressed TSH if it makes you feel better. Reducing medication only due to the TSH is a disaster for the patient.

    Dr Toft was President of the British Thyroid Association and your GP cannot not ignore this.

    You have to have sufficient medication to be below 1 for most of us or even suppressed. You don't want to end up with a heart condition due to your GPs ignorance.

    Always get a copy of your blood test results with the ranges and post on a new question for comments. When you have a blood test for the thyroid gland do not take your medication before (if you take it at night miss this dose) and take levo after blood test. Also have the test as early as possible as TSH is highest then.

  • Are you still taking the Omeprazole? That in itself can make you feel ill, and is contra-indicated for hypos. It is a proton pump inhibitor. That means it reduces your stomach acid. Most hypos have low stomach acid anyway, and that could mean that you are not absorbing your levo properly. Levo needs stomach acid to disolve the fillers before the actual hormone can be absorbed into the blood. If it is going straight into your intestines undisolved, it's not going to do you much good, is it!

    I would say your B12 is far too low, and that will cause a lot of symptoms, too. But, there again, could be that you aren't absorbing your multivit. Myself, I would take a sublingual B12

    (methylcobalamin, as Shaws said, have a look on Amazon). But make sure you also get all the other Bs because they work together. You will feel so much better if you get your B12 up!

    Also think about your magnesium and zinc! Probably best to take them separately and forget the multi-vitamin. It says it gives you all you need, but I have my doubts. Also, are you taking it well away from your levo? Leave at least a couple of hours - four would be better.

    Your T4 is much too low. The stupid idiots did a total T3 instead of an FT3, but even the total is low, so the Ft will be lower. But, as I said, you are probably not absorbing your levo so one would expect them to be low. And you can't really tell if you are converting or not without an FT3. The TSH is also low, but don't worry about that. That is the least of your problems!

    So, trying T3 would be a great idea. You can take that sublingually, too, so that it by-passes the stomach. That way you don't have to worry about food or all the other stuff.

    I can imagine you feel very lost without Dr Skinner, and with an obstructive GP (most of them are a dead loss, anyway). But you are not alone. There's always someone here to give you helping hand.

    Hugs, Grey

  • All really useful. Thanks. I stopped the omeprazole a while ago, after what people said about stomach acid on this site.

  • Good! I really don't understand why they are so eager to prescribe this dreadful poison. I was given it for an arrythmia. I really can't see the connection! I stopped it as soon as I learnt what it was.

  • Hello stiltski, I see you are on Amytriptaline and Duloxitine, these are both antidepressent drugs, I have no experience of Duloxitine but Amitryptaline left me in a zombie like state. There is another version which I found helped with pain and that is Nortryptaline, this for me, does not leave me incapable of getting out of bed. My brother who is hypothyroid found he is much better without Amy and gone on to Nortryptaline. It is more expensive than Ami. £12 instead of £3.00 so you may have a battle on your hands..

    I feel you should ask your doctor WHY you are on 2 antidepressents.

    I hope you can resolve this. Regards

  • Thanks. I am only on a very small dose of Amitriptyline (10mg). I was given it initially for insomnia and to help with night pain. I did not have problems with it for a long time, but I think you may well be right that it is not helping the tiredness, so will ask doc to change to Nortriptyline.

  • You may be getting reaction between Duloxitine and Amytryptaline. If you type Duloxitine/Amytriptaline in to google, or your search engine, you will find a lot of info. there.


  • Thanks!

  • theres no FERRITIN result and I suspect that is low

    IT MUST be over 70 in order to even utilise Thyroxine

    hence its no wonder you are little better

  • Good point and thanks. I think I will have to get it done privately but will definitely do so.

  • Hi, I too have been diagnosed (by my GP) as having Fibromyalgia. For years I told him I had symptoms of hypothyroidism, but he just kept saying my TSH was normal!! Now I know how wrong he is!

    Are you familiar with the site? They are very helpful and if you post your blood results they will advise. I've now started treating myself following the info in their Guide Book.

  • Thanks for your reply. One of the others on the forum has directed me towards the site; I will also post my results there. So sorry to hear that you are a fellow sufferer..I really sympathise. x

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