Thyroid nightmare

Hi, hoping someone has some wisdom to give me. I am absolutely certain I have post partum thyroiditis. This isn't the first time this has happened to me. I've had hyper symptoms for 10 months since giving birth and now feel it is on the change. It started in Feb bad sweating Day and night ridiculous amounts, on edge, diarrhoea etc. My tsh wasn't done until July and was 0.7 ( my argument it could been below range in this period). They have ruled out cortisol etc. The tsh was repeated in November and was 1.2. I pushed and they did t3 and t4 and said fine but don't know the range. My problems are if it is on the change it has to move from bottom to top logically. How long would this likely to take anybody? As if I have bloods done now I feel like they would be normal as I'm swinging back and forth between both last two weeks. Complete opposite symptoms. Nobody has and will test my thyroid antibodies. Is this likely to flag this up if I pay for the tests from blue horizon. Can all levels be ok apart from antibodies?

We have thyroid in the family my grandad had overactive and my mum had both eventually leading to removal of full thyroid gland. I know I'm right I just can't find anyone to believe me and help me prove it x

12 Replies

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  • Jodie2010 Yes, all other levels could be OK apart from antibodies. I would do a Blue Horizon test, that way you'll get both types of antibodies tested whereas the NHS only do TPO when they do agree to do them.

    Also, 'fine' means nothing. Always ask your surgery for a print out of your results with their reference ranges, it is your legal right under the Data Protection Act 1998.

  • Thank you I just needed someone to tell me it could flag something up before I go ahead and do it. So I'm not wasting my money. I'm desperate, nobody will treat any symptoms till they know the cause as they can't apparently. Unless they know what they are treating they can't treat the symptoms. For 10 months on a morning I've had to sit in the garden in my pjs just till I stop sweating. If I go inside outside back in again the temperature change makes me look like I have had water thrown over my head. At my wits end. But I felt a change two weeks ago. Diarrhoea sweating and menstrual cycle stopped for a short time. I went the other way. Freezing cold, lethargic, complete dip in mood, could sleep forever even though I was suffering insomnia. But past couple weeks it feels back and forth. I need answers I have 3 children and at the moment most days not even enough energy to get dressed. I'm going to do the tests privately for my sanity if nothing else. Thank you for your time x

  • I'm sorry you are having problems. I think sometimes our instinct gives us a clue about why we don't feel good. SeasideSusie has recommended antibodies and below is a link re Pregnancy, including infertility but go to date September 11, 2004 for info on thyroiditis and this is an excerpt from the question after that one.

    Just before or after delivery, the woman's immune system is likely to become more active again. The increased activity will worsen any autoimmune disease she has, or if she didn’t have autoimmune disease before, it may now appear. If she already had autoimmune thyroiditis, it will worsen at this time. If so, her levels of thyroid antibodies, TSH, and thyroid hormones will be out of their reference ranges—meaning that according to lab standards, her results will be abnormal.

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

  • You are spot on. No matter how vague the symptoms are to a dr I know what I am feeling within my body. Unfortunately if that tsh is in range they just won't accept what you are saying. I've noticed a real lack of knowledge and understanding of thyroid with the gp. The tsh is all they go by. And they are being thorough most things been tested. The frustration I was referred to endocrinology and all they did was text my cortisol and discharge me when clear. No thyroids were done apart from a tsh level when I questioned thyroid again. Why!!!!! I just don't get it lol. Thank you both for your time. You feel well and truly on your own when feeling like this. Last time I suffered was 7 years ago. I had two miscarriages in a row and suffered hypo symptoms for 18 months. I was floored and couldn't function. This time for the first time I got hyper symptoms then I came across post partum thyroiditis and every part of me is screaming this is it! X.

  • Miscarriages can be due, as I'm sure you know, to hypothyroidism and I'm sorry you had two. I think we get angry when we know what finally caused them but doctors appear unconcerned. It comes as a surprise that few doctors are aware of hypo or post--partum conditions.

  • I read it can cause miscarriage and I do think that's why I had two in a row. All I was told for 18 months were the symptoms were in my head. I was diagnosed at the time with raynauds syndrome another one connected so I have read. I have to say it's the most frustrating thing I've ever had to go through. I am hoping if I hang in there long enough then it will show on the bloods. I read about post partum thyroiditis when I felt my symptoms change and that was the first one that came up. And the penny dropped that that was what I suffered with last time. i was absolutely floored for 18 months I didn't get the overactive bit I just got the underactive symptoms. I've suffered with the over active symptoms for 10 months and I can physically feel and see the change. My hair that has been absolutely fine has turned to straw, my daytime sweats have stopped. Still getting through the night but it's severity is not as bad. They have told me I look like I have thyroid eye disease but that can be a separate thing so go get my eyes tested! But I've got the symptoms to go with the eye disease regardless of what tsh is saying. The problem is I'm too scared to push in case again due to it being post partum I'm going to get told this is post natal. On the plus side the Drs have seen the sweating with their own eyes. Normally happens when I go from outside to inside I can't seem to adjust my temperature.

    Thank you all for your advice, words of wisdom and caring attitude. It is genuinely appreciated x

  • Also a goog idea to check levels of vitamin d, b12, folate and ferratin. These all need to at good (not just average) levels for thyroid hormones (our own or replacement ones) to work in our cells. As well as both antibodies

    thyroiduk.org.uk/tuk/testin...

    Blue Horizon - Thyroid plus eleven tests all these. £99

    This is an easy to do fingerprick test you do at home, post back and they email results to you couple of days later.

    Usual advice on ALL thyroid tests, (home one or on NHS) is to do early in morning, ideally before 9am. No food or drink beforehand (other than water) If you are taking Levo, then don't take it in 24 hours before (take straight after). This way your tests are always consistent, and it will show highest TSH, and as this is mainly all the medics decide dose on, best idea is to keep result as high as possible

    If you find you have high antibodies (Hashimoto's) then you may find adopting 100% gluten free diet can help reduce symptoms, and lower antibodies too.

  • Thank you very much really helpful. My vitamin b12 and vitamin d been told are ok my folic acid is low but told it nothing to worry about. Yes gluten has crossed my mind. But I know my antibodies have never ever been done. Ana has which is to do with lupus and this result was normal but not sure if that one is concerned nnected to thyroid at all x

  • You really need to see the results that were described as OK - just in case the wise ones here think otherwise 😊 B12 needs to be over 500. Ferritin and folate need to be halfway in range and Vit D around 100 .....

  • Thank you very much I will ask what the levels were this week when I'm there. X

  • Google, Suzy Cohen's work re the Thyroid and Dr Isabella Wentz - they discuss probabilities of Postpartum Thyroiditis also google Chris Kresser and Thyroid. Chis Kresser has a free ebook about the Thyroid - you could print off pertinent paragraphs and take to your GP :)

  • Don't know if you have looked at stopthethyroidmadness.com/h...

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