Doctor won't act

Hi there,

I've been feeling pretty rough since i packed in smoking 3 years ago. The main symptom has been tendonitis, however my hair has been falling out, i've been making mistakes due to lack of concentration at work, i have a constant reflux cough, breathlesness, over 2 stone weight gain, carb & caffiene cravings. However, tiredness has been my least troublesome symptom. Though i have been going to bed earlier and earlier, and catching myself napping on the sofa unexpectedly in the evening. But it was enough to make me ask for a thyroid test. Blood tests have shown TSH level of 5.87. However T4 is 18.9. I have requested a free T3 test twice and both times lab have not actioned the request. My ferritin is only 30 and my b12 only 222. Both at the very low end of normal which i'm told is also hypothyroid related. My doc has told me there's nothing more he can do, but i'm only 42 and i'm hobbling round like an old lady. Where do i go from here? Has anyone been in this situation? Any advice mych appreciated as i've been made to feel like a hypochondriac.

23 Replies

  • Sorry i meant also to say i've had autoimmune test and it came out negative

  • Hi,

    The hair falling out may be directly related to the low ferritin. you could buy some spa tone iron from supermarket or chemist and start taking it.

    The low b12 is a problem.... Suggest you have a look at getting some sublingual b12 nuggets... (Amazon)

    The tsh is too high, but without antibodies the doc might be reluctant to help. Maybe you should lst your symptoms and ask for a 'trial' of thyroid hormones or at least a referral to an endocrinologist.. A list of symptoms check list...

    Hope this is a start!

    G x

  • Hi Catfink - well done for quitting!

    (I've been over a year now, except that one time when I was especially upset)

    I agree with galathea, sort out ferritin and B12 - actually all the B Vitamins work together.

    (one of my fav after quitting is B3 niacin - they daren't name it nicotin 'tho)

    I think low biotin is another culprit with ferritin for hair loss. Vit D sorted out joint/muscle pain.

    With such a low B12 of 222 I'd nip over the the PA site - to make sure - you don't want to just half supplement if nerves are involved. Low B12 is usually connected with gut malabsorption?

    Reflux cough? - check out too little acid (not too much). Apple cider vinegar/betain etc.

    Although you're not 'autoimmune' the carb craving can indicate something going on gut-wise - many find relief avoiding bread etc. Sadly they don't teach GPs basic nutrition.

    Labs won't do FT3 unless the TSH is out of range, cost I believe.

    After a recent visit to my GP who had just been to Lanzarotte - I would prescribe everyone a sunny holiday - if only! J :D

  • Oh a sunny holiday would be just the ticket, if only i could get a prescription for that! Many thanks indeed, i've bought some sublingual b12, fingers crossed :)

  • That's brilliant info thank you!

  • Until fairly recently all I could get was a TSH test, but like you I had all the symptoms from when my TSH topped 2. After 3 years of suffering I worked out for myself that it was thyroid related and went to see the late great Dr Skinner privately. He put me on T4, and when that did nothing T3, but that gave me terrible side effects. At that point the GMC mounted its first attack on the good doc, and In was left knowing I needed T3, but unable to get NDT prescribed. I sourced it myself and have been self medicating ever since.

    You need a T3 test, and it looks as if you will have to have it done privately. You can do that via Thyroid UK. If your T3 is low, you aren't converting and will need to supplement. Given your high TSH that is the most likely scenario. If its towards the top of the reference range, where it should be with a high T4 then your problems lie elsewhere.

    But with your ferritin and B12 so low, you won't be able to process your T4 properly anyway, ferritin needs to be over 70, B12 over 600.

    Was your autoimmune test for thyroid or pernicious anaemia?

  • My immune test was for thyroid, i may ask my doc about having a pernicious anaemia test too :)

  • I would suggest taking a multivitamin mineral supplement that contains both iodine and selenium. And an iron supplement, preferably a heme iron supplement which is better absorbed than the other ones. (30% as opposed to 10%). More expensive as well. I don't know if something like this is available in the UK. In the US the best combo (without the iron) is Carlson Nutra Support Diabetes ( Check it out on Amazon. If you can get it that's great. It's got cyanocobalamin as opposed to methylcobalabmin but this is a problem for some people, not all.

    Historically there has been some concern that taking zinc and iron at the same time may significantly reduce absorption of both or either. This has now been shown to be insignificant.

    I have no commercial interest in Carlson products. I have done a lot of checking around for a really good multivitamin/mineral supplement and this product is probably the best on the market. The only problem with it is the capsule contains beef gelatin. My employees are Hindu and for the sake of better health their position on taking a medication that contains beef gelatin is: it is medicine, it is necessary. (I didn't realize when I ordered this product that it contained beef gelatin. But medication trumps religion at times.)

  • Thank you for the information, i really appreciate you taking the time for me :)

  • absolutely ridiculous

    your TSH shows your hypothyroid and because of very low ferritin no matter how much T4 you have its not being converted into the t3 your cells are screaming for

    You have to address the low ferritin issue PDQ by taking iron plus at least 1000mg of vitamin C

    that will take several months

    A TSH of over 5 should be treated change your GP for one who bothers to understand thyroid

  • Absolutely correct. In the States this would be treated.

  • The tendonitis could well be thyroid-related too. Although it might not clear up quickly or at all when you get your thyroid in balance. It has been a big problem for me in my feet and legs. Bear in mind that when the medicos say 'tendonitis' they just mean 'something we don't understand going on in tendons'. It's awfully debilitating - it tires you out just walking a short way because of the pain, I do know: sympathies. Where is yours?

    Have you considered a cortizone injection for the tendonitis? The NHS make a big hoo-ha about giving them, and how many you can have per year - to the point where I had to take my screaming credit card firmly in both hands and go private. But not only do they sort it out (if the injector really knows where to stick the needle) but the cortizone is good for thyroidism as well. Others with better medical knowledge than I will remind us why that is (please??)

  • This is interesting! My tendonitis has been mainly in my achilles, but now my right shoulder has started to play up too. I'd decided not to go down the injection path as i'd heard long term it can cause damage, but hearing your results is making me think again

  • I think the cautionary tales are more about repeated injections into the same site (as an athlete might have) than one to clear up a painful tendon. If one's feeling bleagh anyway because of thyroidism, the extra drag factor caused by every step being literally a pain is not to be lightly dismissed. Been there. Certainly worth talking to the doc about. There should be a Podiatry clinic nearby to which you could be referred. The top physiotherapist there will know where the needle needs to go.

  • Take D3 too if you are not already taking it - research the level you need on the Vitamin D council website and take no notice of the RDA set in the UK. It is not evidence based.

  • I actually bought some d3 and never took it, there was an episode of Casualty where it made them all sick & it scared me off it

  • latest blood test report from NHS hospital Lab for my husband states

    Recommended therapeutic targets for TSH

    0-60 years TSH 0.1-2mU/L

    60+ TSH 0.27 - 4.2mU/L

    Free T4 not over 25pmol

    take that to your GP

  • Thank you i will!

  • Wow, I feel for you and it's maddening to say the least. I don't understand why doctors do not get to the bottom of all this. Yes I would keep going to doctors until you find one that can help you. Be your own advocate and listen to your body. I also have been where you are and they told me everything was normal lol but my body was not telling me that. Hair loss is traumatic too but it will come back. Hang in there. I have come off my Armour due to not me doing and I've decided to stay off it for a

    Little bit until my body gets thru the jolt of no Armour. My hair has been falling in droves due to this but I think it's starting to slow up. I will be finding a doctor here too in my new area and I'm going to see if I can get tested as its been awhile. What's crazy is I feel great since I stopped taking Armour but I still need get it checked. It is very frustrating but you will get balance. Keep searching and follow what your body tells you. Yes you're too young to be feeling like that. I am your age. Hang in there and keep us posted.

  • Thank you so much for your reply, i will keep chipping away. Wishing you the best of luck with yours x

  • Tendonitis was one of the very early symptoms I had of hypo. So I'd say very likely to be related. You have other obvious symptoms too. If my TSH was that high I'd feel really ill. You ought to be given thyroid hormone treAtment. I found Levothyroxine reduced the gross symptoms but switching to NDT has made me feel better still fine tuning and banishing the more obdurate symptoms. I self medicate cos getting NDT on the NHS is like pulling hens teeth - tho some do succeed. Because I became overtly hypothyroid there was no question over treating me with Levo it was that or death! It seems a real fight to get help if you are just tipping into it - but even that can have dire effects for the individual.

    I hope you are able to sort out the vitamin deficiencies and get some thyroid hormone treatment.

    People will really help you here it was the beginning of my road to proper recovery joining ThyroidUK :-)

  • Thank you for your reply, it's interesting to hear that the tendonitis was the first thing for you too. Sounds like i've got a way to go yet, this support has been fab x

  • I'd say arthritis which started at 23 was probably my first symptom, then acute achilles tendonitis and heart pains in my 30's, I was suspicious I was hypothyroid even then but a blood test came back as normal and I thought I must be imagining it. There were innumerable symptoms in my 40's all brushed aside as the menopause, despite my mentioning it ran in the family! No blood tests for it were ever run. By my 50's it became overt I had given up on doctors by then believing myself to be an insane hypochondriac but eventually I felt so bad I decided to ask for a thyroid test - even then i was just offered antidepressants but I stood my ground and doc ran a thyroid function test. 1st came back hyper 2nd c 1 week later seriously hypo with a message from doc to say I must start taking the tablets immediately. I think I'd have been a gonner without starting levothyroxine I was in such a pitiful state by then - raving mad with hallucinations and terrifying nightmares and so cold it was unbearable - I was sure I would freeze to death and it was just a day before xmas. Luckily most people don't have to go through that hell before being properly diagnosed but it is a worry that it still happens in this day and age. You can loose your fight to take action and find all sorts of curious notions to explain away the symptoms if they are repeatedly dismissed by the medicos. I now realise it ought have been obvious to anyone medical that could put 2&2 together. Plus the sooner it is treated the better.

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