Confused - Hypo mis-managed or Chronic Fatigue??

Hi everyone,

I'm 33 and was diagnosed hypothyroid approx. 12 years ago I think. During this time, GPs and NHS consultants have made regular adjustments to my throxine dosage (currently 175mg as of June this year). I've experienced good and bad patches during this time, however have never had what I would call 'normal' energy levels or felt entirely well whilst on this medication. Whenever the thyroxine has been increased I have never felt any noticeable difference to my symptoms, which leads me to suspect it is not working for me as it should.

Over the past year/18 months, I have noticed a real deterioration in my health and I suffer from constant exhaustion, brain fog, weight gain, dizziness, aching and memory issues to name but a few symptoms. Over the past 6 weeks or so the aches have become more severe (especially in the mornings) and I've experienced morning sweating. Peeling myself out of bed has become a real effort; I've had to adjust my working hours and often struggle to arrive by 10am, so am concerned about how this will affect my job. Relatively light exercise, such as my daily 10 minute cycle ride to work which I have been doing for 2 years +, is suddenly a lot more difficult and quickly leaves me out of breath. Spending a morning working on the garden recently necessitated a day off work to recover, which I am sure is not normal for a 33 year old.

I really feel that this condition is now really affecting my quality of life, and managed to get a referral to an NHS Endocronologist. However, despite carrying out various blood tests (last results below), a synacthen test and coeliac test, he has been unable to pinpoint any issues, other than low vit. D and iron, and believes that the thyroid results show the condition is being satisfactorily managed.

TSH = 0.32 (range 0.2 - 4.2)

T4 = 13.4 (normal range 12 - 22)

Free T3 = 4.3 (normal range 4 - 8.3).

B12 = 322 (range 197-866)

Folates = 8.3 (range 4.6-18.7)

Ferritin = 48 (range 13-150)

Vitamin D = 35.6 (less than 25 = deficient, 25-50 = insufficient, 50+ = sufficient)

Since my last appointment in June, I've been taking the following vitamin supplements along with my thyroxine:

Prescription 200mg Ferrous sulfate (3 times a day with 500mg Vitamin C)

1000mg B12 lozenges

1000iu Vitamin D drops

However, on visiting the endo for a follow up last Friday, he did not order any re-tests; he simply said that he had now exhausted all avenues, signed me off from his care and has instead referred me to a Chronic Fatigue service, the nearest being 70 miles away. I've received a follow up letter from my GP this week, warning me that 'chronic fatigue services have quite strict criteria before they accept referrals'. I'm left feeling confused, and unsure whether this is an accurate diagnosis or whether I'm just being fobbed off.

I've been unable to find an NHS GP who will consider prescribing NDT, and am now considering going privately in order to try this. Considering seeing Dr. Liam Chapman in Hendon. If anyone has seen him, I would be so grateful if you could PM me with your opinion. Posted the question a few days ago but didn't get much response. Obviously it's an expensive route to go down, so I want to get as much info as I can before I make an appointment.

Hoping you knowledgeable people can help me more than the NHS! ;-D

16 Replies

  • Hi - I'm not knowledgeable but would say straight away that your B12 and ferritin should be higher - but also you might function better with a higher T4 and therefore lower TSH but getting anyone to prescribe more levo is a minefield

    I'm sure some experts will advise you better than me on here lol

  • It is clear from your results that you are

    a) Under-medicated for your thyroid condition

    b) Need a higher dose of B12 than you are taking - 5000mg per day sublingual methylcobalamin would be an improvement.

    c) Folates - need to be higher - I've read that methylfolate is better than folic acid, but I don't know anything about this personally.

    d) Ferritin - taking ferrous sulphate must be very grim for you. It is the cheapest, nastiest, worst tolerated iron supplement around. I take ferrous fumarate 210mg, three times a day and just about tolerate it. It can be bought without prescription from some pharmacies (shop around - some chains of chemist, e.g. Boots, insist on a prescription - I buy from Lloyds) in boxes of 84 - enough for three per day for 28 days, it costs roughly £4 a box. There are lots and lots of other iron supplements available in various forms - the important things to note are how well absorbed they are and what the elemental iron content is. For example, my pills are 69mg of elemental iron per pill. Spatone (iron-infused water) is 5mg elemental iron per sachet but some people claim they absorb iron much better from this than higher dose pills.

    e) Vitamin D - make sure your supplements are vitamin D3, NOT vitamin D2. If they don't say what they are don't buy them. You are so deficient that you would do better with between 5000 iU per day and 10000 iU per day, at least for a month or two. (Then re-test, because it can rise to toxic levels). You need to know how well you are absorbing it to get some idea of when to switch to a maintenance dose.

    Other comments :

    Levothyroxine must be taken on an empty stomach with a full glass of water, and don't eat for 30 - 60 minutes after taking them (some people wait even longer, but I don't know how they cope!). Take iron supplements at least 4 hours away from your levo.

    There are lots of other things you need to find out... Are your adrenal glands working okay, and is your cortisol production okay? Do you have gut issues? Low stomach acid? Candida in the gut? Do you have antibodies? Are you gluten-intolerant? All these things need to be addressed, but take things one step at a time otherwise you will get overwhelmed by it all.

  • Thanks for your reply humanbean. Interesting re the vitamins. I checked my Vit. D and yes it is D3 I'm taking rather than D2:

    I've been wary of overdosing on vitamins (can this have adverse effects?) so have been sticking to the recommended doses on the bottles up till now.

    I take my Levo with water just before I go to sleep, so generally a good while after eating. Maybe I should switch to taking these in the morning though.

    The synacthen test was done to test adrenal gland function and results came back fine. I've never had a saliva test though, which I see mentioned frequently on here. The doctor dismissed it when I mentioned it, as not being very helpful in this instance.

    I don't really have any stomach issues. I was tested for coealic, which came back negative, however I have decided to try removing gluten from my diet to see if this helps, and have been gluten free for approx. 4 weeks now. Haven't noticed any real difference. Perhaps a little less bloating, but no changes in energy levels/relief of symptoms.

  • Adverse effects can happen with some vitamins and minerals if you take more than the recommended daily amount (RDA) for a long time. But if your body isn't good at absorbing vitamins and minerals because of underlying health issues, taking the RDA is like adding a drop of water to a bucket with a hole in which leaks two drops a day.

    Your levels are low, so taking what it says on the bottle is clearly not working.

    Just as an example of what can happen...

    1) I had lowish vitamin D. Not catastrophically low, but lower than the healthy range. I took 1000 iU per day of D3, and a few months later I re-tested. My levels had substantially dropped. I now take 3000 iU per day and this is slowly raising my levels. They are now in the healthy range, but still rather low. When I get up to a level I am happy with I will reduce to 2000 iU per day.

    2) The RDA for elemental iron is 14mg per day. I currently take 207mg per day, and I started at this level as a result of a doctor's prescription. Rather than keep going back to the doctor I buy my own iron and pay for thorough blood testing every few months. I've been taking this dose, with the odd week or two off when I was going to be testing my levels, for nearly 18 months. My serum iron, haematocrit, haemoglobin and some other blood measures I check were about 30% of the way through the reference range when I last tested it. I will reduce my dose when I get up to 50% of the way through the range. But I suspect I may be taking iron for life because I just don't absorb it well.

    There are a few things to consider when taking minerals and vitamins :

    1) What is the RDA.

    2) What is the maximum long-term supplementation level? The tolerable upper limit? (Or whatever it is called) It isn't always easy to find out.

    3) Some vitamins are water soluble and most of these can be taken in high doses without worrying about them - you will just pee out any excess. Be careful and check though - it isn't true for all of them.

    4) Some vitamins are fat soluble. Take them with your fattiest meal of the day for best absorption.

    I bought this book which I find very helpful. But even this I check and double-check, and look for other sources, before believing what it says :

  • None of us, I believe, are medically qualified yet we can see that all of your results are low. Why is T4 so low as well as T3, the T3 in particular is the active hormone and you cannot feel better until there is sufficient in your receptor cells. B12 - low and humanbean has given excellent advice. I would personally have to take the self-medicate route as many have done and recovered their lives. For some it is more difficult but I think you have given the NHS long enough to ruin your health.

    You were diagnosed around the age of 22 and 12 years later, you are still no further forward with a healthy lifestyle. I think you have been undermedicated all along - it really is a disgrace and now, because your TSH is low so the assumption is 'it cannot be thyroid related' so they plump for Chronic Fatigue. This is a link I did earlier.

  • Thanks Shaws. I questioned the low T3 and T4 with my GP and Endo, and got the response that they were within range so fine. As you say, there were both going on the TSH results and stated that this was 'exactly where it should be' so all was ok. I said my symptoms seemed to show otherwise, but it was made clear that that was the end of the conversation. SO frustrating!!

    Some of the symptoms of chronic fatigue do apply to me, but others just don't ring true which is why I am not convinced...

  • This is a link I did earlier:-

    An excerpt from another link:

    A study by Fraser,[44] for example, showed that the TSH and free T4 tests—which Guttler uses—are in fact highly fallible. Fraser studied patients on T4-replacement. Of 108 patients who were free from hypothyroid symptoms—and any signs of overstimulation—53 (49%) had TSH levels below the lower end of the reference range. This was a TSH level that thyroid specialists such as Dr. Anthony Toft have falsely designated a "thyrotoxic" level.[47,p.91]

    The endocrinology specialty has intimidated most conventional doctors into accepting without question Toft’s false designation. As a result, most doctors would have had Fraser’s patients—who were free from hypothyroid symptoms but had low TSH levels—reduce their T4 dosages. Of course, this would have raised the patients’ TSH levels. And most likely, it would have caused them to begin suffering again from hypothyroid symptoms.

    Most conventional doctors also accept without question dogmatic pronouncements, such as Guttler’s, that patients cannot have hypothyroid symptoms when their TSH levels are "normal." Because of this, conventional doctors would blame the new hypothyroid symptoms of Fraser’s patients on mysterious new diseases, like "fibromyalgia" (see Addendum 1) and "chronic fatigue syndrome."[23][24][25]

  • Your FT3 level is low,being just inside the lower range when It should be higher.I'm surprised there has been no mention of you being offered to try some T3.It may be the thing that will help you as it might be you are not converting your T4.

    My own FT3 was 4.1 in a March when my Endo asked if I would like to try some T3 Liothyronine.I now take 10mcgs along with 75mcgs Levo T4 and it has made a lot of difference to me.I'm not yet completely right but T3 has been the way forward.I'd like to try 20mcgs to see if there is further improvement.

    It should be able to be prescribed on the NHS.however,it's a bit hit and miss which GPs will prescribe it because of cost.My Endo issued my first prescription from the hospital pharmacy and then my GP accepted my repeat prescription.

    This about the best I can recommend to you.I hope you get sorted and feel better soon.

  • Thanks Marfit. I did question the low FT3 results, but they would not sway from the usual comment, 'results are within range, so all is ok'!! I would love to try some T3 (or NDT which I understand contains both T4 & T3) but don't know how I can go about getting a prescription without the expense of going privately. I have Louise's list of recommended NHS GPs and Endos, but my GP has already referred me to the Endo I requested and I've had no luck there. I have a feeling he will be reluctant to let me see another GP as in his mind all avenues have already been addressed.

    How has the T3 had a positive effect on you? Would be really interested to hear your experience of it.

  • If you want to try T3 and can't get a prescription for it, it can be bought online quite cheaply. Post another question asking people where to get it, specifying that answers must be given via PM.

  • My response to T3 was noticeable very quickly.My husband commented on my seeming to have more energy,being motivated and enthusiastic .......more the old me. I remember feeling as though my body was waking up again.I was waking up in the morning thinking about what I wanted to do each day as though the medication was reaching all over me.

    My aches and joint pain are not completely solved yet,but I'm still trying to find the right combination for me and I have an appointment at my local hospital on the 20th Oct. for knee problems which may be something else.I will though ask about the connection between joint pain and thyroid problems. I was left on a starter dose of 50mcgs Levo for over 10 years and don't know what damage that may have done.After joining this group and gaining further knowledge from here,I asked my GP about T3. He had no idea what I was talking about.when I asked about NDT he'd never heard of it.

    Fortunately he referred me to the Endo I now have who was well aquainted with both T3 and Armour thyroid and is supportive.

    I am only really knowledgeable about my own experience.I have also added D3 and B12 methyl cobalamin to my Levo and T3 plus I have recently added Rose hip + vitC capsules to see if it helps my joints.

    However,looking at your notes I would have thought that if your Levo was all you needed that 175 mcgs should be supporting you.But if you aren't converting it and still have symptoms it would probably be worth persevering to try some T3.175 mcgs is a lot to be floating around in your bloodstream if it's not going anywhere......maybe that's what's causing your persistent problems.Your GP and Endo seem to be like the majority who only go by lab ranges without treating us as patients with ongoing symptoms.

    You need to find someone knowledgeable who is going to understand your problems.Leaving you to struggle on is not acceptable.

  • Well it is an ABSOLUTE disgrace that they have left you lumbering under what is clearly under medication. Whether this means further increase/s of levothyroxine, introducing T3 or transferring across to a natural desiccated thyroid treatment. It is no wonder that your B12, ferritin etc are low -this is a common consequence of under treated hypothyroidism. So yes they should be treating your low ferritin, b12 etc.... but before doing so they should also be checking you for PA -to make sure that you don't have an additional condition causing the low b12. So please insist on them doing at least a test for Intrinsic Factor.

    It is outrageous that they are now trying to allude to CFS -clearly they have forgotten that CFS is diagnosed on an exclusion basis -hypothyroidism being one of them! You will find there is whole band of people who have been given this label when really it was poor treatment of their hypothroidism casuing the symptoms _ I was one of those people......

    To be honest, sadly, I think you will either have to find a good private practitioner (ask Louise Warvill from thyroid uk for her list of docs) or you are facing the self treatment route. They have had 12years to get it right....and they still haven't done it!!!! They should be stripped of their jobs!

  • Thanks for the reply Waveylines. What is PA? And Intrinsic Factor? I'm not yet familiar with some of the terminology used on here but am getting there!

    It makes me laugh that they have now 'ruled out Hypothyroidism' as a cause of my symptoms, because as far as they're concerned, the blood test results show I'm being satisfactorily treated. But until I've been given the chance to try T3 or NDT, how can they say they've explored all avenues? I feel like I come up against a brick wall every time I see a GP/Endo...there is just no room for discussion.

    I am starting to think that going privately is the only way forward.

  • PA is Pernicious Anaemia. When B12 molecules are in the stomach from food - the cells of the stomach wall - parietal cells - secrete Intrinsic Factor that binds to the B12 molecules to enable them to travel safely from the stomach - through the duodenum and through the gut to the Terminal Ileum where it is absorbed. So having the test for PA would involve being tested for anti-bodies to the Intrinsic Factor or the Parietal cells. PA is an auto-immune illness.

    There is a HU forum for PA. Also an excellent book by Martyn Hooper - Pernicious Anaemia The Forgotten Illness and B12 Deficiency. He is speaking at the Thyroid UK Conference on 18th Ocotober. He is a sufferer.

    Going privately may well be a good idea - choose carefully....

  • You haven't said if you've got the antibodies for Hashimoto's unless I missed that (it's early!). Your results are similar to mine although my B12 is 248. I'm waiting to be referred privately and I'm assuming there's an autoimmune element, as PA & Hashi's run in my family. Please get some NDT - read Stop The Thyroid Madness, even if your new Endo won't support you. It's crazy their actions are dictated by numbers like this but we only have one life. Wishing you all the best x

  • Hi,

    Thanks for your reply.

    I asked my endo if I had Hashimotos, and whether a test could be done to clarify this. He just said that it was likely, as most people with hypothyroidism do.... Helpful!!

    I have bitten the bullet and arranged an appointment with Dr Peatfield in a couple of weeks time. I really didn't want to pay privately, but have lost patience with the NHS.

    Hope your private referral brings you come positive results :-) x

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