Hello there. My first posting here, though I've just posted on the Lung section too.
I just wondered if anyone posting here has a problem with the hypothalmus or pituatry? I'm hoping to see an endocrinologist eventually but for my own information finding someone with similar symptoms would be a godsend.
I'm losing weight - nearly 2 stone in about 16 months. I have a goitre but blood tests show nothing wrong there, just that I'm on the edge of normal.
I suffer from infrequent recurrent fevers, always in the evening and lasting about 3/4 hours. Starts by me feeling chilled then rigors which are debilitating. Knocks me out for about 48 hours. Has anyone here had these? So strange and can't find a trigger.
I'm going to stop now, too much info already, but I'd be really interested if this sounds familiar to anyone.
Thanks a lot j
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jib70
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Hi helvella. Thank you for your response. No I don't have the test results or reference ranges. Just been told I'm 'within the range' and I've never queried that, should I? I am not on any thyroid medication. Would obtaining my last test results be useful?
You should be able to request recent results - depending on surgery how they handle that. Make sure you get the reference ranges as the result alone means nothing without.
We have seen all too many people who have been told their results are "normal" but any proper assessment would come to a different conclusion.
Do you believe you are losing weight from fat? Or liquid? Or muscle?
Thank you. I shall request my most recent full results from the GP's surgery. I have no idea about the weight loss, I'm 5 ft 7 in. was 9 st 12 oz now I weigh 8 stone but I'm reasonably active and feel OK really for my age! I do appreciate your replies and apologise for being so ignorant about details. thank you.
That is quite some weight loss. One of the issues is that people can lose muscle when hypothyroid. This has lots of consequences - if left unaddressed this can affect the heart (which is mostly muscle). Don't panic, there is nothing you can do instantly, but do try to identify if your arms are thinner, or your thighs. It does tend to resolve when properly treated for hypothyroidism.
Hi helvella. Though they mean nothing to me I have obtained my last (8 June) test results so posting them here. Free T3 6.4 (range 3.10-6.80) ...Serum TSH 0.02 (range 0.27-420)... Free T4 16.3 (range 12.00-22.00).
'Normal' I am told, and as I don't understand them I've never bothered to check.
Please do request to have your adrenal function tested, I lost significant weight weight before it was identified. I was extremely weak though too. I do not recall whether I had fevers etc. It’s all a bit of a blur now.
I am treated now with hydrocortisone for life. Extra when I’m having sick days.
I hope I’m not alarming you, but the losing a lot of weight struck a chord with me.
Thanks FB2660. Seems something to investigate, and no you are not alarming me, I'm not the panicky type, I like to be informed and prefer to face things head on. I just have not the faintest idea what is causing the weight loss. j x
It was the heading of your post I found interesting. I’m sorry but I don’t suffer with the same complaints you’ve mentioned here.
I am under investigation currently for pituitary or hypothalamus issues. Only had bloods done on ACTH which was 0.5 (2-11). What lead you to knowing you have put/thal issues please. I have under active thyroid and on Levothyroxine 75 day. Each time I take Levo I’m virtually crippled within 2 hours of taking it. I also have suffered with low cortisol 68. If I leave out Levo my cortisol improves and I’m not on the floor literally. But then my thyroid suffers. I’m waiting to be transferred to NDT a natural thyroid hormone med. Just wonder what your put/thal issues are.
Hello McPammy and thank you for that post. I am sorry you are suffering with such symptoms, I do hope things get better for you.
For me it has been suggested that hypothalmus/pit problems may be the reason for these debilitating fevers I have. Several years ago I suffered a bad accident and severe head injury. It is since then that I've had these recurring extreme fevers so possibly, finally, it is being investigated as a possible cause. Who knows, I've only just started on the journey of investigation.
In the last 16 months or less I've lost a lot of weight unintentionally, perhaps there is a connection - I feel I've opened a Pandora's Box with my original post and never expected anyone would reply to help me. What a wonderful site this is.
Thank you for your reply. Sorry to hear you had a bad head accident. I hope your investigations find the true source of your fevers and weight loss.
I’m not sure what’s going on with me. It seem one step forward and 5 backwards. One day good then 5 bad. Was given new meds yesterday Erfa. Took my dose at 7am by 8.30am I couldn’t walk. I had to lay flat most of today just no strength. I’ve got to keep taking them or my thyroid is compromised but when I do my cortisol is severely effected. I’m going round in circles. I’m waiting for an insulin stress test. Been pushed back 3 times now. This will determine if it’s ACTH or CRT issue. Just need it diagnosed.
McPammy I am so sad to hear of your problems but glad you replied to me.
Why is it so hard to get a proper diagnosis when the symptoms are clear.
A few years ago my GP prescribed carbimazole and I took it for several months (don't know why I needed it) then he told me I had myxodema madness (is that correct?) and to stop the carbImazole because it wasn't working. I feel like a guinea pig sometimes.
Meds that lay you out are very difficult to handle. Did they tell you that you may have an aggravation after taking them? The side effects of some meds seem to be worse than the illness.
Sending you the strength to cope, best wishes, j xx
You are legally entitled to printed copies of your blood test results. You need to find out exactly what was tested. Often it's only TSH and FT4
For full Thyroid evaluation you need TSH, FT4, TT4, FT3 plus TPO and TG thyroid antibodies. Plus very important to test vitamin D, folate, ferritin and B12
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.
All thyroid tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)
If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).
About 90% of all hypothyroidism in Uk is due to Hashimoto's. Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten. So it's important to get TPO and TG thyroid antibodies tested at least once .
Gluten intolerance or coeliac disease can cause weight loss. As can hyperthyroidism (Graves disease) or some hypothyroid patients loose weight too, especially in early stages of Hashimoto's
A goitre can be present with Hashimoto's and indicates you do have thyroid issues going on
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