Raised antibodies, fluctuating TSH, experiencing symptoms and doctor confused...can anyone help me please?

Hi there, newly signed up and would like any advice or clarification as to what's going on with me.

Ok, well, I'm a 28 year old female with no family history of thyroid illness but a family history of autoimmune disease. I was first told by my GP in January 2012 that I had a high TSH of 5.2 (normal 0.2 - 4.2). My FT4 was 16.48 (10 - 23) but FT3 was not tested. At the time I wasn't told what a high TSH meant but instead told not to worry about it. I went away knowing less about what I had yet still in shock.

Within this time the front of my neck had swelled yet went down within a space of 4-5 weeks. It was very hard to swallow without pain/discomfort.

I had an ultrasound which showed the thyroid as "bulky" but still put down in the report as "normal" and had my thyroid levels retested soon after with the TSH within range at 2.2 and the GP said that a thyroid condition was then ruled out.

I still felt quite bad, muscles were aching and I wanted to sleep all the time. I changed doctors as I got so fed up with my previous one refusing to tell me what was going on. Whenever I asked them about the high TSH that caused me so much concern they skirted around the issue and kept referring to the one after! I said to them again, "that wasn't what I asked you. I asked you why I had a high TSH the first time," only to be answered with, "the one you had after was fine."

I went to a new practice at the start of this year and I wanted to wipe the slate clean by asking to be tested for anti-thyroid autoantibodies. The new GP agreed as I hadn't been tested for antibodies before and it would put my mind at rest. They came back elevated at 84,000 with normal range below 34,000. TSH was tested also and came back at 0.69 with the normal range 0.2-4.2 (same as previous lab I presume).

The GP explained to me what I have is an autoimmune process going on in my body and it's attacking my thyroid.

My periods began to get really heavy and the tiredness would just not go away so three months later I had my blood retested for TSH and it came back with the following:

TSH - 22

FT4 - 10.9 (10-23)

The GP said it appeared to be the case that I have an underactive thyroid gland and he suggested I start treatment on thyroxine. He also warned me it would be a pretty long wait for anything to happen. My medication course was:

31 May - 14 June - 25mcg

15 June - 29 June - 50mcg

30 June onwards - 75mcg

I had my blood tested for TSH 2 weeks ago to see if the thyroxine had any effect and it came back at 4. The GP looked at my result and said it was normal but at the high end of normal. He said my iron was low and he wanted to put me on iron tablets.

I then asked if it was ok to take iron tablets on top of the thyroxine and he looked at me funny and said, "you're on thyroxine?" And I said "...yes." He then looked back at the results and realised that the blood test didn't take into account the fact that I was on thyroxine. He looked back to me and asked me, "silly question, but you ARE taking the thyroxine every day, aren't you?" I said, "every day without fail."

To me he was giving the impression that the TSH should be down much, much lower than it is. He then said, "I'm very confused as to why your TSH has risen and fallen so much when it's been tested." He then added that with the TSH, it was one of those things that's hard to measure when I'm experiencing symptoms. He asked me how I felt before taking the thyroxine and I said that to be fair I can't remember that far back but I still feel as tired and achy now as I did when I wasn't on the tablets. He's since increased my meds from 75mcg to 125mcg.

I don't have any friends/family to support me as none of them have thyroid disease or knowledge of what it is and I'm worried about saying anything about how I feel to my boyfriend as he gets very short with me when I talk about it. Can anyone help?

Thanks x

Last edited by

21 Replies

oldestnewest
  • As you now know you have Hashimotos - the auto-immune version of thyroid illness. With Hashimotos you can swing from being HYPER to HYPO and back again in the early stages. I too have Hashimotos and also Crohns which is another auto-immune illness. Am doing fine though.

    Maybe worth looking at your diet and your gut health as I have read so often that the immune system lies in the gut lining so any imbalance there will need to be addressed. Have you had your VitD and B12 levels tested. They are both very important as they work at a cellular level and help with the conversion of T4 to T3.

    There is some very good information on the main Thyroid Website about Hashimotos and of course lots has been discussed on this forum if you are able to find it.

    The increase in meds may help with the aches and pains so it is good to give it a try and it will take time for you to feel benefits - so try and be patient if possible. Selenium is another mineral that is good in helping conversion of T4 to T3. Do hope you soon feel more balanced - it will happen. So keep asking questions and communicating with this very supportive forum.

  • Hi Marz thanks for your reply and advice.

    I have not been tested for VitD and B12 levels, only iron. I take it the next time I go to my GP I would have to ask them to test for those two things specifically? I'm not sure, I'd gotten on fine with asking them to test for antibodies so it seems like a pretty safe bet. I don't know if it's something the NHS does on a routine basis!!

    Is Hashimoto's not very well recognised within the medical profession? The doctors I see review my symptoms, go through my blood work and are seemingly scratching their heads over what's wrong with me. It's almost as though I'm the only patient they see with this problem!!

    Thanks x

  • There was a good post yesterday about Hashimotos with a link to a website - I think it was Shaws that put it up - please take a look and have a good read. You must also look at the Thyroid UK website and learn as much as you can.

    Sadly doctors are not so good at vitamins etc. as it is not part of their training. They seem to think that just being in range is fine when really you need to be near the top for B12 to enjoy optimal health. VitD needs to be around 50/60. You may have a battle on your hands with your GP but inform yourself and politely stand firm...they will not test them automatically so you will have to ask.

    It's not just Hashimotos that docs struggle with - but the thyroid and its variations that seem to be a problem for them....Good Luck !

  • Thanks Marz, I'll have a look into the post done yesterday re Hashimoto's.

    xx

  • amazon.co.uk/Hashimotos-Thy... - maybe you can access this link ! x

  • Hi Marz, thanks for supplying me with the link. It took me through to Amazon but to a page that doesn't exist. Sorry!! xx

  • Ooops sorry about that. I certainly am NOT a technobabe ! Here is the link from shaws that I mentioned in an earlier post !

    thyroidlifestyle.com

    Good Luck - you will find details of the book albeit on Amazon.com but it is also available on Amazon.co.uk

  • Lol no worries! Thanks for the link you've provided. xx

  • Hi Jo!

    I was 28 when the thyroid roller-coaster started. Last May I got really sick and it took them 13 months to diagnose me. My TSH was up and down. If you have tested positive for antibodies like I did you may have some for of thyroiditis - an immune response attacking your thyroid. The fact that your thyroid was "bulky" would indicate this also. The doctors need to give you a diagnosis and support that you need.

    I was diagnosed with Hashimoto's. I went through a period last year of hyperactivity, then euthyroid (when hormone levels appear normal) and now I'm hypo and on 200mcg. It is hard and I completely sympathise with you. I'm still not 100% and it takes time. My parents/brothers/sister don't fully understand but they are getting there. I definitely you recommend trying to talk to them about how you are feeling.

    Feel free to DM any time xx

  • Hi Pennyrose thanks for your reply!!

    Yes, it is hard when your own folks don't fully understand - boyfriend doesn't seem to want to know the full details but I guess it's because he's just worried about me. The strange thing is his dad is hypo himself and we would kind of make a joke of how we would go down to stay with his folks for a bit and he would be up and about at 3 in the morning and get up out of bed at 1 in the afternoon! It isn't so much as a joke now as I tend to be up and about and wanting to go to bed at that sort of time myself.

    Grandparents are a bit more understanding and I just got off the phone to them just now - funnily enough they received a letter addressed to me from my old clinic aboutthe thyroid issue, so I'm not very sure as to why they wrote directly to me like last time, except sent it to my old address. I found their last letter extremely intimidating so I'm not too keen to pick this next one up and have to read it.

    Thanks for your advice and support

    Jo xx

  • Hi Reading your question, it strikes me as vital that you have a Free T3 test, you most likely need some T3 with the thyroxine ( T4). This lowers the TSH and helps the symptoms in lots of ways ( especially weight). If the T4 in your body is not converting correctly to FT3 , then it needs some help. We often need FT3 to be right at the top of the range but never over. If GP unable to test for it, common with NHS restrictions, offer to pay them through their Lab, usually about £10. If not possible, like my GP use one of the ones on line Labs. Yes expensive to DIY but make sure a reputable Lab which medics recognise, I use a well known one, Blue Horizon, then if low take to GP ( or Endo) and ask for it on a script. I hope this helps.

    Jackie

  • Hi Jackie, thanks for your reply.

    I didn't realise I could pay the GP through their lab for the FT3!! I'm worried about asking them as they would ask me why I would think of such a thing. It isn't that I don't want to ask them, I'm just worried they won't understand. Online might be the way to go if they're reputable as you say and affordable (I left my job due to the tiredness/muscle pain from the hypo).

    With the weight issues, I don't actually have any oddly enough. I'm still slim, 5ft 3in and around about 8st/50kg. The thing about taking the Thyroxine is that because hypo patients are technically overweight I'm not, and I'm just concerned that because I'm on a higher dose I'll lose even more weight (which isn't ideal when I'm still very small.) When I told my friends/family I had a thyroid problem they all thought I was hyPER and not hyPO.

    Thanks x

  • Hi Jo, I am underweight (officially) and very Hypo, hashi. My brilliant Endo says that you can be either with low weight, although unusual. In fact all hypo and hyper symptoms can be either but not usually so. most GP`s think thyroid disease simple, it is not, therefore a lot not good with it.I have to have my FT3 at the top of range, I do not loose any more weight, in fact for years before other serious medical problems was over weight, in spite of swimming 2 miles per day, eating correctly ( fanatically) etc. I agree you need to be careful, some GP`s are touchy. If you can pay for the tests with say, Blue Horizon, finger prick ( main site) or venous, needs some one to take then, both tests highly recommended, the labs most private hospitals use. Quote TUK 10 for a £10 discount. Then, you can choose, on results, if to show it to a medic, may be a better one in the same practice? You can actually swing hypo to hyper with Graves, unusual ,if so needs a good Endo. however, even a top radiologist specialising in thyroid radiology, assumed my thyroid nodules, enlargement were Hyper, by looking at me! if he had asked I would have instructed him !! Best wishes,

    Jackie

  • Hi Jackie, thanks for your advice.

    I've done finger prick for blood sugar test so I might stick to what I know I need to do!! There is a private clinic in Bristol (where I live) that can do the whole thyroid panel for over £130 but again there's the issue with money. I'll use the quote that you've given and look more into it, but it's such a shame that both GP practices I've seen about this seem to be trying to put me into a box for hypo or hyper.

    Thanks

    Jo xx

  • Hi jo, I am in the same situation as yourself hashimotos d, is no joy, swinging up and down thyroid levels ,thyroxatine.in my opinion will not help as its not thyroid it is autoimmune d, therefore you will carry on swinging up and down. I learnt the hard way, the immune system needs sorting out, hence having low iron will also have a impact on the medication you take, meaning any vitamins b12 and vitamin d will not absorbed properly. I am sorting out my iron, vitamin d, b12, and hopefully start medication on t3. Hope all this makes sense. I am typing on my kindle and can hardly see my post. Xx

  • Hi Merissa thanks for your answer.

    I have to admit even when I was on the lower dose of T4 (started off on 25mcg, then 50mcg and finally 75mcg before this big jump onto 125mcg) I noticed no difference whatsoever. When I spoke to my GP about this he said my TSH in particular seems to be one of these things that has to be tested at the right time. But when I've got symptoms I have the blood test done and when I find out the results they're normal and when I feel pretty much ok the results aren't!! Must be some sort of delay in what effect the high TSH does I guess! Your answer came out fine -- I've got a Galaxy Tab and I'm thinking of "borrowing" my boyfriend's bluetooth keyboard - the built-in keyboard takes up half the tablet's screen lol! :) xxx

  • Lol, your antibodies are making you sick, what happens you have flares and antibodies are pooling in your blood from the thyroid when the body attacks itself. I also feel when I have a good day my levels are raised.

  • Sorry hit the reply button to quick. Antibodies will also swing, they will carry on climbing until eventually your thyroid will become hypothyroidsm, therefore taking thyroid meds won't help because it's the immune system that's faulty, it would be a good option to sort out vitamin and mineral deficiencies first, see if it helps, you gut then needs care, it's a long process but I'm sure you will get there. Take care x

  • Hi there Merissa thanks for the reply. I figured it was little more than a coincidence!! :) When I read up about Hashi's from an article online it says about it being an illness where it's mainly hypo but with bouts of hyper. I guess the attacks are the flares. Take care too xx

  • Hello Jo,

    I am sorry you are having so many difficulties. From what I've read, when you have a thyroid problem like an autoimmune disease such as Hashimoto's thyroiditis, your levels going up and down so much is more common than many doctors seem to think, as the thyroid is attacked not constantly but intermittently. Sorry, I know this post is 5 months old, and I have not had a chance to read the other answers. Also, you deserve to have loving, supportive people in your life who do not get short with you when you discuss your health.

    Tovebird

  • You needcresukts for ferrittin and folate as i will bet they are very low and the reason why you are not recovering or able to utilise the thyroxine

    ask your gp to test

    ferritin

    folate

    b12

    calcium

    vit d3

    magnesium

    zinc

    all will need trearing until they are in UPPER QUADRANT of the ranges

    always get actual figures and reference ranges

    NEVER accept normal or in range

You may also like...