What is wrong with me ?

[jojojowilts43]

I don't know what to do anymore . I've seen my doctor who says my symptoms can't be thyroid AS TSH are within range. TSH 3.79 ( 0.38-5.33) she thinks its hormone related as I'm in menopause since aged 39 due to hysterectomy. I'm 45 now and have been on hrt since . my sleep has gone haywire and I either can't sleep for hours or I'm waking up early hours and cant sleep again for his til it begins to get light.. I have been having freezing cold episodes again all day til it gets to night time and then soon as I try sleeping bammmm the hot thing will hit me! I'm sick of it and feeling anxiety. My hair has been coming out in loads of strands, and I recently kept weeing more than usual and urine test revealed infection which I had antibiotics for.. But still kept weeing and wee was sent away and came back as okay!.. I asked doctor about doing a full thyroid test but she said no. They don't do those tests Here in my town. I keep hearing I need those tests ? But when I said this to her she asked who says? I said google says it! But she said I shouldn't read all that on there.. Arghh!! I known I'm repeating myself from previous posts but what I asked before is if there is ANYBODY on here suffering with same issues as me?.. I also have major stomach etc issues which I think are maybe the cause of my problems.. Hiatus hernia,...is what I was told I have a year ago..I have put on such a lot of weight. It feels as though something is quivering in stomach and feels shaky inside at times especially after I eat.. Im having aches in arms even if I try to lift them I break into sweats or chills and I was even reading about fibromyalgia??.. Or possibility that maybe endometriosis has come back to haunt me as this was reason for hysterectomy in the first place. All I known is that I'm not in a very good place and I'd really like somebody to talk to..that's maybe having or had these same issues as me?.. I have blood results here if anybody wants to know. But not thyroid ones .. Last time had vitamin b12 it was - 270 .. Ferritin last time -39, this time is 46 which I think is too low..

I have been stressed a lot but I don't think this is the cause of all this. And I known previous folate was at a low end number too.. Anxiety has been plaguing me too. Carb cravings. Fatigue ... My doctor upped my hrt patches from a 40 to a different brand of 75 but they won't stay stuck properly so I'm now not bothering with that one.. And not sure what to do.. But for now I'm back to original hrt patch of 40.. Anybody have any idea what could causing me to suddenly have sleep problems too? I'm getting nowhere with my doctor

[Nanaedake]

Could you post your blood test results with the ranges next to them so that we can make sense of them? Have you got vitamin blood test results and have you got autoimmune thyroid disease?

[Marz]

Any chance you could have Private Testing done through Thyroid UK ? TSH- FT4 - FT3 and Anti-TPO and Anti-Tg. Also B12 - Ferritin - Folate - VitD. They come in a package - a kit sent to your home and results by e-mail. That way you will get the full story and hopefully people here will be able to help. Yes your symptoms could well be thyroid - how are you treating the LOW B12 and Ferritin ?

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

If you are supplementing B12 - then further results will be skewed. Are you taking any other meds ?

Your TSH is too high - but without the other results it is only part of the picture. In the link I have posted above there is a section about Understanding Test Results - think it says a TSH over 2.5 should be considered Hypo.

Tell your GP that Thyroid UK features on the NHS Choices Website

[SlowDragon Administrator]

As your GP refuses to help with full testing then you will need to get private tests

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 be done as early as possible in morning and fasting.

Once you get results post on here and members can advise.

[shaws]

You must be well-hydrated a couple of days before you pin-prick or draw blood.

The blood test should be at the earliest possible, fasting (you can drink water) and if you were on thyroid hormones you'd allow a 24 hour gap between the last dose and test and take afterwards. This keeps TSH at its highest as it drops throughout the day and that's all doctors take notice of,

Unfortunately for us these days, doctors know no clinical symptoms and only rely on the TSH. I shall give you a couple of links which will be helpful.

thyroiduk.org.uk/tuk/about_...

thyroiduk.org.uk/tuk/about_...

thyroiduk.org.uk/tuk/about_...

Tick off your symptoms and take the next step,

TSH and T4 aren't sufficient, we need Free T4 and free T3 and thyroid antibodies too.

Ask GP to test B12, Vit D, iron, ferritin and folate.

[TSH110]

I got all that tommy rot about it being the menopause despite me repeatedly mentioning my mother and grandmother and sister all had hypothyroidism and could that have something to do with the way I was feeling - I had all sorts of problems heart pains, gut problems, insomnia, itching, cramp, endless coughs and colds, depression, anxiety, thinning hair, exhaustion, passing out, feeling dizzy standing up pains in my arms that were so bad I could not brush my hair etc etc but no dear it was nothing to do with that it was definitely the menopause. The menopause came and went and I became more and more unwell in fact I was so overtly hypothyroid by the time I stood my ground I argued for thyroid tests not antidepressants I was lucky to I survived to tell the tale. Your TSH is not normal it is too high. If you were in Germany or the USA you would be classified as hypothyroid and given treatment but unfortunately you are in backward old Britain whose College of Endocrinologists allows the TSH to elevate to c3x what our more sensible and humane foreign medicos think is too high. Hypothyroid by nature of your geographical location - or not - it is totally bonkers. All your symptoms will be due to your body clock running too slowly and all the chemical processes being messed up as a result thus affecting every cell in your body. How a medical doctor cannot see what a serious effect this would have on anyone is beyond me, but there are plenty of them out there I'm afraid with no imagination. Can you try a different doctor - yours sounds especially blinkered fancy telling you to not to take responsibility for your own health and do your own research but only get her opinion like she is the font of all knowledge or something - and that is all it is - an opinion and a faulty one at that - medicine gone mad. Another doctor might be more sympathetic and better informed or at least reasonable and possible to reason with. Your TSH is not far off 5 and you have obvious symptoms of hypothyroidism - would be good to have antibody tests to prove definitively you have autoimmune thyroiditis. You could try another doctor and ask for blood tests for antibodies given your TSH is elevated and you feel very unwell with many symptoms of hypothyroidism. You can get the tests privately there's a page on thyroid uk with different labs costs etc on Thursday one place does a discount on 3 of the tests. If you can get the practice to do them - all the better. This gives you ammunition to start rooting for thyroid hormone replacement therapy and the sooner you act the better don't get brow beaten like I did, loose heart and get into the dreadful mess I ended up in. I thought I was a hypochondriac because I believed the rubbish I was told thinking doctors knew best but this is not always the case. You live in your body not them. All my sisters now have thyroid disorders and I discovered my mother's sister was on Levothyroxine so all of us females have copped for it. The menopause indeed, utter baloney.

[jojojowilts43 in reply to TSH110]

Hi thanks for your lovely reply. I will reply soon but for now I wanted to say that I take levothyroxine .. 150mcg as I was classed as hypothyroid a year and a half ago now. But now my TSH is classed as being within normal range and this is why my doctor refuses to believe any of my issues are because of thyroid!

When I first was told about my thyroid my TSH was at 16 I think it was. And since beginning levo its gradually worked my TSH level down to 3.79 but its gone up a tad as blood test before was 2.84. All your symptoms u mention are what I have still.

What is autoimmune thyroiditis?.. I will check out my bloods as I can't remember if I had antibodies tests done or not..

So did it turn out to be your thyroid then which was causing all your symptoms? U suffered a lot didn't u it drives u bloody mad I know that.

[helvella in reply to jojojowilts43]

There is plenty of evidence that the standard TSH range is inappropriate to those of us on thyroid hormone replacement. Most of us expect our TSH to be about 1.0 or lower.

3.79 is far too high.

The so-called normal range could only ever be appropriate for broad screening for thyroid disorder.

[jojojowilts43 in reply to helvella]

Hi so if it needs to be around 1 what do I have to do? I take 150mcg levothyroxine .. Would my doctor be likely to up my dose if I asked them ?

[helvella in reply to jojojowilts43]

From what you have written so far that seems unlikely. Others will probably respond - see what they say.

[helvella in reply to jojojowilts43]

Sorry - replied briefly last night as I was falling asleep!

Do you take your levothyroxine well away from food, drink (other than water), supplements and other medicines?

When do you take your levothyroxine? Some people do better taking it at bed-time rather than in the morning.

What time of day do you have your blood drawn? The difference you report is entirely possible within a day due to this variation.

The morning median TSH value in the patients with subclinical hypothyroidism was 5.83 mU/L; in the afternoon, it was 3.79 mU/L.

ncbi.nlm.nih.gov/pubmed/228...

Do you make sure you don't take your levothyroxine in the 24 hours before a blood draw?

All the above issues could be contributing to your treatment not being as effective as it could be, and not being recognised as probably inadequate.

However, I agree with others who say that you really need FT4 and FT3 taken at the same time (and delaying your day's levothyroxine as needed) in order to get a clearer picture.

[Angel_of_the_North in reply to jojojowilts43]

Ask [e-mail] for a copy of the Pulse article that explains that most people need Ft4 in the top quarter of the range to feel well, and that means TSH under 1 or suppressed. If the GP won't accept that from an expert, you'll need to buy your own online and up the dose yourself.

[TSH110 in reply to jojojowilts43]

jojojowilts43 oh yes all of them were due to hypothyroidism as they all went once I started taking NDT, I only got partial relief on Levothyroxine. Auntoimmune thyroiditis is when your own antibodies go wrong and start attacking your thyroid tissue thinking it is foreign. They slowly destroy it. It is the most common type of hypothyroidism. There may be no goitre I certainly never had anything like a goitre in my neck. It can take decades for the antibodies to finally destroy the thyroid altogether which is where I had reached on getting treatment. You get one massive blast of hyper as the thyroid dumps any thyroxine it has then plunge into eternal hypothyroidism - it is not very nice. The antibofmdies involved are TPO and another one I can't remember you don't usually have both but it is not unknown to. I did get short burts of hyperthyroidism but not sure if I had both antibodies I had a king of mix of hyper and hypo symptoms too. See if your results mention them. If you have elevated numbers you do have autoimmune hypothyroidism which should be treated. Louise in admin has as article from Anothiny Todt saying the TSH should be under one and the Free T4 and T3 in the upper ranges. You could get a copy from her and show your GP to try and get a higher dose of Levo that might do the trick and make you feel better again. Vitamins and minerals are important too but I found they seemed to resolve of their own volition when I took NDT and everything started working properly again. I think selenium is an important one. I went gluten free and that seemed to help a lot the theory is it reduced the antibody attacks. Some poo poo this although it dies seem to be the case with those suffering from Crohs disease another autoimmune disorder. It also removes a lot of refined junk from your diet so maybe that is significant.