TSH 77 T4 not feeling great am I a hypochondriac?

[thyroidfairy]

Hypothyroid advice I have been hypothyroid for 24years on Thyroxine 175mcgs with no problems, 6 weeks ago TSH 180 gp increased Thyroxine to 225mcgs thyroxine bloods rechecked and how 77mcg I feel bit of hypochondriac as GP thinks I should be back to work but I'm suffering extreme dizziness to point feel going to faint only lasts approx 10seconds, itchy,fatigued although getting better,poor memory, concentration and repeat myself..am I just needing to give myself a shake and get back to work?

[Silver_Fairy]

Do you have your full thyroid test results that you can edit your post with? with ranges (numbers in brackets)

Members can comment more correctly then

All I can say is that's a big jump in TSH (and yes you would feel very unwell!) but I cannot understand how your GP put your Levo up then down in a short amount of time?

[shaws Administrator]

Hypochondriac with a TSH of 77, just let the GP have that and he'd make short work of getting a decent dose of thyroid hormones.

You must truly be feeling so bad and considering you've been hypo for more than 25 years, there's got to be something wrong with either the levothyroxine you're taking as I know there's now no Brand name in the UK (Eltroxin previously) so (and I'm not medically qualified) maybe you've become resistant to levothyroxine, being T4 only and did your GP not test your Free T3, that would indicate the level in your blood. Levo is inactive and T4 only and should convert to T3 which is required in our billions of receptor cells. #

I'd ask GP to prescribe some T3 for you until you see a decent? Endo and put up a new post and ask for a recommended NHS Endo. Your GP cannot ignore a TSH of 77 unless he thinks you're not taking it daily.

Never mind you getting back to work, it's the GP who should get to work and prescribe thyroid hormones to relieve your miserable, clinical symptoms.

Ask him to check your FT4 and FT3. You could have become resistant in some way.

Read about FT3 in this link. Copy and take toyour GP. Our bodies cannot function, heart, brain and everything else without T3.

It is really ridiculous that patients have to inform the doctors on how best to treat them in order that they can have relief without their heart struggling to pump etc. etc. etc.

[shaws Administrator]

For us to feel reasonable TSH should be around 1 or lower. FT4 and FT3 towards the upper end of the range but they rarely test them.

[greygoose]

Smithyvo, it sounds as if you've got some sort of absorption problem. Are you taking anything for acid reflux, like omeprazole?

Have you had any of your nutrients tested? If not, ask your doctor to test vit D, vit B12, folate and ferritin. If these are low, then there will be an absorption problem, and your doctor should be investigating your gut, testing for Coeliac, etc.

You should be seeing an endo, because this really is not normal, to have a TSH that high, on a dose of levo that high. Your doctor is obviously incompetent, and knows little about thyroid. Would it be possible to see another GP?

[galathea]

With a tsh that high, i would be very tempted to walk into a and e.... The doctor clearly has no idea what he is doing and you are at serious risk of further complications. (Coma, heart attack, that sort of thing)

Has the make of the levothyroxine you have been on changed recently? It sounds like you have a duff batch. Report this via the yellow card scheme so the meds can be investigated. A few years ago, the Teva brand had to be withdrawn because it became ineffective And people complained about it.

Yellow card link: yellowcard.mhra.gov.uk

Xx

[thyroidfairy in reply to galathea]

Ok I lied rant not over to answer galathea question nope the make of thyroxine hadn't changed, huge thanks to you all for taking time to read my rant & respond

[thyroidfairy]

Thank you all so so much getting back to me so quickly & your advice is amazing. I get vitamin B12 injection every 3months, I am coeliac. 6weeks ago I fell backwards with no warning & skull hit the concrete I had head injury , seizure( never had a seizure in my life) resulting in overnight stay & stitchesThe day I fell I had had routine thyroid bloods taken at GP felt fine went home & subsequent fall. I'm mentioning this as bloods taken at GP TSH 180 rechecked in hospital hours after this & TSH 100...no one can explain this.(if anyone in thyroid community can explain that please please let me know)referred endocrinologist who was fixated on this he kept saying he couldn't understand this but blamed laboratory they must have made a mistake although GP blood test had time on sample & same at hospital which matched when had blood tests..1st time I have seen endo doc who rechecked thyroid bloods & TSH 77 this with within 2 weeks & he would advise GP recheck thyroid bloods by GP in 6 weeks as no good before then, he saidaid I was on right side thyroxine nothing more he could do & he would see me 2017! Honestly he went on & went on & on about disparity in bloods when I fell. I kept saying there was absolutely nothing I could have done to no avail. So glad back of skill was where I fell as you connot do that intentionally as I felt there was a degree of medics who asked if I had stopped taken my thyroxine intentionally so had to continually justify myself at time of feeling so bad. You'll be glad that's my rant over😊

[Marz]

I think it could possibly be that you need your B12 injections more often. How are your Folate - B9 - levels ? The two work together in the body.

Do you have Hashimotos ?

[thyroidfairy in reply to Marz]

Thanks Mars my folate levels were checked about 2 months ago & were in the normal range so GP determined this was the right dose. I do not have exact number as you call to get results and receptionist let's me know result normal no action required..luckily I am due my VitB12 on Wed so I will get the numbers then. Re Hashimotos would that not have been picked up when TSH so abnormal & my symptoms?

[Marz in reply to thyroidfairy]

OK so Folate was in the normal range - but that could mean that it is at the bottom of the normal range - when it should be halfway through the range

Anti-TPO and Anti-Tg are the anti-body tests that should be done to confirm Hashimotos. No they are not routinely checked - they mostly have to be requested .... Do not forget to always obtain copies of your test results - then you would know for yourself. It is of course your legal right to have them. It has often happened on this forum that anti-bodies were not routinely tested - and some people only find out they have Hashimotos years after their initial diagnosis through the advice on this forum.

[thyroidfairy in reply to Marz]

My son had thyroid antibodies of 8550 doc's said highest reading they had seen & no he didn't need treatment it was just an indication he would become hypothyroid in the future, was told don't worry about this reading don't focus on the numbers look on it in terms of negative/possible & his was positive he would need tyrosine in the future. I'm pretty sure I had antibody checked & it was within normal range but I am due to have thyroid rechecked on 28th Oct so I will find out then and ensure it was checked

[Marz in reply to thyroidfairy]

So is your son receiving treatment now ? I was diagnosed with Hashimotos here in Crete back in 2005. The TSH - FT4 - FT3 were all within the *range*. Antibodies were HIGH. However my GP here started me on Levo/Thyroxine - in her words - to support the thyroid whilst under attack from the anti-bodies.

Why wait to be really ill when the thyroid is completely destroyed. Also one auto-immune condition can lead to another. Is he gluten free ? Gut issues ?

I think you should ensure your have been tested - and if they have only tested the Anti-TPO then request the Anti-Tg anti-bodies.

The ranges do vary from lab to lab

[thyroidfairy in reply to Marz]

My son is now on 50mcg thyroxine one day & 25mcg every alternate day with no discernable benefit. He's not been tested 're gluten free & to be honest as he's palliative when he's not to tired to eat I get him whatever he wants. I will ask for Anyi-Tg anti-virus that's good advice thank you☺

[greygoose in reply to thyroidfairy]

Tyrosine? Why would he need tyrosine?

[thyroidfairy in reply to greygoose]

Apologies getting back to you I managed to lock myself out of this site somehow! I'm blaming thyroid brain fog for that & also typing Tyrosine' when it should read thyroxine which makes much more sense

[thyroidfairy in reply to thyroidfairy]

Hey greygoose or anyone can you advise how I change my username please? much appreciated 😊

[greygoose in reply to thyroidfairy]

OK, I understand.

Sorry, can't help you with changing the name.

[humanbean]

I can think of a few things which might make your TSH go up so dramatically. I'm probably just repeating what others have said already :

1) You haven't been taking your pills regularly.

2) You have a faulty batch of pills and they don't contain any Levothyroxine or don't contain enough.

3) Something has altered your absorption of your thyroxine. Have you been prescribed any new medicines in recent months or taken any new supplements or changed the dose of any meds or supplements? Have you changed the time you take your pills and could food be interfering? Have you had any surgery in recent months?

4) You may have developed a TSH-producing tumour on your pituitary or a TRH-producing tumour on your hypothalamus. (I've heard of people having the first, but have never heard of the second, so I have no idea whether it ever happens.) Were you given an MRI scan of your head?

You really need to ask your surgery for copies of any blood tests done in the last couple of years, including actual results and reference ranges. Once you have them, copy the thyroid related ones and the nutrient related ones into a new post and ask for feedback.

Your doctors are acting strangely. They are blaming you or blaming the blood tests. They haven't actually proved what the problem is and yet they've discharged you. This is not acceptable and, quite frankly, I'm baffled by their actions.

With a TSH of 77 anyone would feel desperately bad, and the vast majority of people would probably be bed-bound and unable to walk with a TSH that high. You are not a hypochondriac.

If you want to double check your thyroid results with an independent laboratory, and you are prepared to pay, then you could order this without your doctor being involved :

bluehorizonmedicals.co.uk/T...

The above test can be done as a microtainer test (a finger-prick test) or a vacutainer test (a sample from a vein in the arm, like the NHS uses). If you can get someone to take blood for you then buy the vacutainer test. If you can't then buy the microtainer test.

Some info on private testing from Thyroid UK (who run this community) :

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

A guide to how to do finger-prick testing :

bluehorizonmedicals.co.uk/W...

If the above interests you, then let us know and we can give you more info on timing of test, conditions of test, posting etc...

[thyroidfairy in reply to humanbean]

I take my thyoxine as I have done for 24years first thing in the morning before breakfast it's same routine as showering ever day you just automatically do this. find it increasingly hard over the last 6weeks to understand medics in this. I am a single mum with a terminally ill 20year old son, my 2 got paid for me to go to Dubai for my 50th have not had a holiday in 6years so beyond excited to be going plus going with my other son age 24 to have a break as he's his brothers carer so I can work full time. I felt so happy for not just me but for my other son. Another long reply but I just can't emphasise enough no way jeopardize this amazing opportunity by not taking my thyroxine it has never entered my head & being hypthyroid for 24 years im absolutely aware of the risk you would be putting yourself under. This has impacted on holiday & work also as I can't be ill as need be well for my boys. I was due to fly to Dubai on the 16th of Sept but fell etc on the 12th of Sept & GP said too ill to fly & be out of the country so he has addressed that. I'm just so frustrated as complete miserable mystery

[humanbean in reply to thyroidfairy]

I only included option 1 in the list of possible causes because I was making a complete list, I wasn't accusing you of anything.

Ask for a new prescription of thyroxine and make sure you get a different brand. It may be that you had a faulty batch of pills.

Have you had an MRI scan of your head and thyroid?

Will you do the private testing I mentioned?

[thyroidfairy in reply to humanbean]

No no no I did not think you were accusing me of anything I was just giving examples to demonstrate my frustration not anything else whatsoever. I am extremely grateful for all your suggestions & blame brain fog if in anyway offended you..

[humanbean in reply to thyroidfairy]

I'm not offended.

[thyroidfairy in reply to humanbean]

I had CT scan of head when I had my head injury & it was normal, I will absolutely do the private testing you have mentioned thank you☺

[thyroidfairy]

Phew that's a relief I only joined this forum couple of hours ago and thought I would have to leave again 😓

[Marz in reply to thyroidfairy]

thyroidfairy - so you take your Levo before breakfast - how long before ? Sorry to be questioning you - just trying to help. There needs to be at least an hour before eating or drinking anything with milk to aid absorption of Levo. I think this is why humanbean was asking ......

[Musicmonkey]

So sorry to read your shocking story! You poor thing - I hope you get some help soon.

[thyroidfairy in reply to Musicmonkey]

Thank you so much it's so appreciated to have found this site & know I'm not going mad😊

[thyroidfairy]

I take my thyroxine on empty stomach couple of hours before I have breakfast at work

[galathea in reply to thyroidfairy]

No one has asked yet, but, what brand of thyroxine are you taking?

Xx g

[thyroidfairy in reply to galathea]

Hi Levothyroxine that's what it's always been & I don't want to sound all poor me as everyone has their thyroid issues I'm just fed up of feeling this ill 😐x

[galathea in reply to thyroidfairy]

Yep, levothyroxine, but who is it made by? You dont sound all poor me, you sound like you are having a tough time. I know it sounds like we are grilling you, but you really have to look at all possibilities. As i said earlier, teva was withdrawn some time ago.... It might be that the chemist has given you old stock..... Is there a manufacturers name on the box?

Xx. G

[thyroidfairy in reply to galathea]

Hi G - huge apologies in the delay getting back to you, in my wisdom I somehow managed to lock myself out of this feed. This is what upsets me the most I was an articulate, independent confident person & now I can't even reply to you without some kind of angst..I felt slightly better that my son couldn't get me back in but still felt incredibly stupid when he handed my device back to me & said he didn't know what I had done...AGAIN it was the AGAIN bit that really upset me. I put off doing stuff everyday & tell myself I'll do that tomorrow & I am convinced at that time that I will do it tomorrow. I get satisfaction when I do the thing I had delayed & feel utter failure when another day has passed AGAIN. I appreciate any & all advice & I don't think you are all giving me a hard time. Finally the manufacture is Wockhardt...does that company mean anything? Is there a better company I should make sure I always get? XxY

[thyroidfairy in reply to thyroidfairy]

Seeking advise galathea greygoose about returning to work on Friday. My TSH is 77 & I'm feeling a bit rubbish As I've previously mentioned in this post my TSH was 180 6weeks ago & my gp gives the distinct impression i should be at work. Can't say I feel any better but as TSH much better in the last 6 weeks & I don't think I'm as bad as some folks have posted...either that or I'm hardcore! Being honest with the symptoms I currently have it's going to be a mammoth ask to return to work & I haven't quite worked out how I'll manage this as not just getting to work it's the capacity to manage my symptoms & concentrate to work effectively at work.. My query is maybe if I'm using my brain effectively it would help my brain to kick in & returning to work help the memory & concentration? Would that be safe to do? Is there likely to be any repercussions in doing this? Thank you so much Yxx

[galathea in reply to thyroidfairy]

Well, the Wockhardt brand is at least one of the current ones. Someone else reported not feeling good on it some time ago. healthunlocked.com/thyroidu...

Here is the info about the different uk formulations..... Might be worth swapping? healthunlocked.com/thyroidu...

You are considered to be hypothyroid in most countries when tsh reaches 3 and when it reaches 10 in the uk.

Absolutely do not beat yourself up about being unable to work.

the doctor sounds like an uncaring prat. Find a better one.

Xx

[thyroidfairy in reply to galathea]

Hi G galathea you made me smile with doctor uncaring prat 😊that's good to know I'm on one of the better brands of Thyroxine although interesting to know someone else had issues when on that make & I'll check out links you've suggested. Realised I was being a prat also (so I do have something in common with my gp!!!) So dizzy today & stupidly went into shower & fell although a close call as in the seconds I knew I was going to fall & it felt like I had done a whole sequence of river dance sadly to no avail😊 after fall I got out of tub as fast as I could as you hear stories of folks needing emergency services while naked in the tub & no way was I going to be one of those statistics. 😕Yx

[thyroidfairy in reply to thyroidfairy]

Only bonus being hypothyroid there was some padding when I fell😊Yx

[Glynisrose]

NO! If it feels good do it if it doesn't don't. Your doctors 'thoughts ' are irrelevant go by how you feel not numbers.

[thyroidfairy in reply to Glynisrose]

I know your absolutely right I just have bit of a guilt trip going on😕Yx

[thyroidfairy in reply to thyroidfairy]

Glynisrose your only person who said give work a go if it feels right so going to pick your brains on that topic. I was wondering if you know of folks with ridiculously elevated TSH who don't need to be off work & managed fine? much appreciated Yx

[thyroidfairy]

ReallyFedUp I fell 6 weeks ago with no warning & no recollection getting back in to my home the force of fall caused seizure never had one before head injury stitched & overnight stay in hosp for head injury obs,this fall feels very different