I'm starting to get really annoyed. I have a specialist appt in 3 weeks time. I have now been without meds for 6 days . My tsh is 29 but obvuously has increased in 6 days. last time it went from 50 to 88 in a week so I have to have medication. I have hashitmos thryiditus. I've called my specialists sec everyday for the last week and sometimes multiple times, and she's said my endo will call me back . Not heard nothing. GP won't advise me or help as I'm under the specialist. I'm getting annoyed and more ill as the days go by. My tsh has gone to 89 2 weeks ago and was told I could end up in an coma at any point if i carried on like it.
Back story - I saw the endo 2 months ago due to not being well on levo t4 and not being able to tolerate it. endo agreed that I should come off it and put me on t3 (lio) 20mg tablet half in morning and half in evejing3.and propronaol 3x a day due to heart palptations that I would get . In 3 days i was taken to a and e with chest pains. all results come back fine but was told it was the tablets. (No idea which one. t3 says sife effects are chest pain) a and e Dr took me of them and sent a letter to my endo explaining I've come off them and can she follow up . She sent me a letter saying I was right to stop them and to try 5mg in morning and 5mg in evening with propronaol.. I tried and the same thing happened. I kept having little someone was touching my chest constantly was so weird.. and severe diareah and trapped wind that took 3 weeks to go after stopping tablets. I was told at A and E my tsh was 88 and it scared the hell outta me.. so i took levo t4 again knowing full well i could get ill but I needed something. I took it every other day or every 3 days for 4 weeks and managed to get it done to 27 but ive ended up with Vestibular migranes labrythitus and inner ear infection that's not gone with any antibiotics. apparently its cause ive got fluid behind my ear . Dr thinks it's cause of allergies from the levo. I'm so unwell I can't even drive or work due to veritgo and dizziness. Took me alot to go througy that. anyway I stopped taking the levo . (gp aware) and i called the sec to ask what do i do now. go back on t3 at 2.5mg with or without the beta blockers... and i cant get hold of her. I'm so stuck. My tsh is probably already back to 50 with not taking it and seens not worth it going through all of this as its now gonna go up
im really thinking of taking the t3 again at 2.5 with beta blockers and see how i get on as she has prescibed it for me but at 5mg.. but I obvuously don't wanna no nothing until she agrees with me but this Is taking the Mick.
help!
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Carlylouise90
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I wish I had the answer for you, it’s all totally pants, I’m suffering the same, gp dropped me from 75 to 25 because I was getting chest pains and told me to take it on a night, this stopped the vertigo feeling straight away but then I was waking up at 4am not being able to sleep my anxiety through the roof, mind constantly racing went back to gp and she told me to stop, this was last Wednesday, I started to feel great and by Friday felt like my old self, no anxiety or palpitations, but then yes bang, herr I am again awake at 4 racing thoughts anxiety, depression tired achey, feeling sick. I just don’t know what to do anymore, I hope you find someone relief 😞
I think you should insist your GP gives you a prescription for Levothyroxine but first ask your Consultants secretary if he can ring your surgery or email them to request they issue you with a prescription immediately ... this is doable and if they refuse you can complain about your treatment to the NHS. You need to start on Levothyroxine 50mcg and after 6 weeks have a blood test which shows your TSH, T4 and T3. I don't want alarm you but if you go without thyroxine you can actually collapse and become very ill. Your Doctors are being negligent and need to treat you immediately. You can get symptoms like this when you first start taking Levothyroxine because it can make your thyroid stop making the thyroxine you need because your pituitary gland senses there is already thyroxine in your blood. Slow and steady is the way ... I never took beta blockers because they made my heart beat go too slow which can give you symptoms you have just described.
How do you know you are intolerant to Levo? Sometimes you might think you are because of the fillers or you are not taking enough of the drug so you will get symptoms because you are under medicated. Also 4 weeks is a very short time you need at least 6 weeks for the Levo to get into your system and start to work.
The endo has told me i am intolerant to it due to my severe symptoms. I have a gluten intolerance too.
I've had other mediation and i get side effects and i understand that but how can i possibly carry on with 24.7 dizziness vertigo vestibular migranes where i cant lift my head up off the sofa. the more i took the more i was ill. ended up in. and a and e with fluid going up my brain.
the endo said shes never seen a reaction like rhat before.
I've been trying to do it for 5 years since I was told I had. I've tried the lowest dose and every other day and every 3 days (gp knew) nd nothing helped. as soon as it gets in my system after4 or 5 days i become so unwell I can't work.
NDT might suit you better because it is natural not artificial ... Thyroid S does have some fillers in it but it does suit a lot of people who take it.
Also have you tried NDT? I took Thyroid S from Thailand and it has both T4 and T3 in it and did suit me until I went into remission so I stopped it after 6 months. I have Graves' disease btw.
The man who sent me my Thyroid S was legit and I had no problem getting it through customs and my postman delivered it but it took 10 days and I think you need some medication now.
That is good advice but I think you might need a bigger dose to get your TSH in range ... this is just my opinion and I am not medically trained but I did work in the NHS for over 25 years and do have a lot of knowledge about the National Health Service.
"Hi- You are all probably had enough of me so I am sorry but I do need help so please help me."
Have you had other accounts before? If you have it would be worthwhile to tell us what username you used so we could read more of your history.
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I'm particularly interested in your nutrient levels - ferritin, vitamin B12, vitamin D and folate. If you have other results for iron and/or a Full Blood Count it might be helpful too. The reason I am interested in nutrients is that low levels of some of them, particularly iron, can cause severe chest pain and very fast heart rate.
Edit : Just found some nutrient results in this post :
Your ferritin of 37 was too low and may be adding to your heart problems and chest pain. Without a reference range it isn't possible to tell you what your optimal level might be. (I go by the rule of thumb that ferritin should be mid-range or a smidgen over.) Note that you could have low ferritin (which is a measure of your iron stores) as well as high iron levels in the blood. If that is the case then supplementing would not be a good idea. In fact, it is never a good idea to take iron supplements unless you know quite a lot of info about several iron-related test results.
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I'm also interested in the beta blocker you're taking. What is it called, and what dose is each tablet? And did you say you take one three times a day? I've been on beta blockers before and still take one very occasionally if my heart is going too fast. I've found that the body adapts to them very quickly. When I reduced the dose or stopped taking them altogether my body reacted to the removal of the beta blockers by having a very fast heart rate again. I had to reduce my dose over a few days to avoid the fast heart rate. I'd only been on them for about a week when I got into trouble with them. Now, as long as I only take one dose very occasionally I don't have a problem.
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The symptoms you have described, including the ear problems, make me wonder if you have Meniere's Disease? Has it ever been suggested to you?
If you read the introductory blurb (before the contents list) and the first section after the contents list it mentions a lot of the symptoms you have.
Meniere's Disease is sometimes described as an autoimmune disease, but nobody is really sure, as far as I can tell. Since you have Hashi's, having one autoimmune disease increases your risk of developing more.
If my theory about Meniere's Disease is correct then I wonder if prescribed thyroid hormones of any kind are somehow exacerbating the problem?
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A further point... I looked at your very first post on the forum
and you quote your TSH, Free T4 and Free T3 in the picture you uploaded.
TSH 52.77 (0.35 - 3.5)
Free T4 10 (8 - 21) 15% of the way through the range
Free T3 5 (3.8 - 6) 55% of the way through the range
You've also mentioned in more recent posts that your TSH has gone up and down in very dramatic fashion.
When I was diagnosed with subclinical hypothyroidism my Free T4 was 14% of the way through the range and my Free T3 was only 11% of the way through the range. My TSH was just under 6. I'm not saying that my TSH was ideal for my results, but it shows how useless TSH is since my Free T4 and Free T3 were slightly worse than yours but my TSH is only a fraction of yours. I get the impression that your TSH is being treated and your actual thyroid hormone levels are being ignored, and perhaps it should be the other way around.
I realise that you are positive for Hashi's, so that will explain some of the wild swings in TSH level, but yours is changing so dramatically that I'm sure something else must be going on.
I wonder if you have a problem with your pituitary gland producing too much TSH or your hypothalamus is not doing what it should? If you do then you would probably need to have an MRI scan to prove it one way or the other.
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One final point - a lot of people get a fast heart rate, although not necessarily chest pain, when their T3 dose gets used up and its time for another dose.
I don't think that this post is even slightly helpful. It has just thrown more mud on your whole problem.
Thanks for messaging. I didn't have no old username etc but I copied and pasted the post from my post on my under active thryoid pages so that's why it said people are probably having enough of me.
My ferritin was 37 and I'm supplmenting 2x ferrous sulphate a day. okayed by my GP. Having test on Friday for all vitamins as been supplmenting them all as they low in range. My vitamin D is 58 In August. . B12 was 450 in May. Folate was 8.2 I'm may too. Folate was 3.2 when i become ill in March but it went to 8.2 the next two months. Any of them could be reduced by now. I'm getting the blood test friday. My HG was in range but not had any other iron tests.
I don't get chest pain. I don't suffer with it. It happened when I went on the t3 tablets and beta blockers. Went 5 days after stopping the tablets. a and e said its a side effect of lio the t3 and to stop it so i did.
The beta blocker is called propronalol and i was taking 10mg 3x a day. She wasn't going to prescribe it but said i probably would get palptations.
No one knows what's going on with my ears to be honest. Had the problems since March. never before. Seeing ent on Tuesday so looking forward to seeing what he says. whatever is going on with me with the ears, the #thryroid medication makes it 100% worse. It went away for a bit than I took the levo t4 for a week and it all come back;( so everytime i take the levo i get ears problem and now I think its damaged . I also am being tested for cealiac disease and apparently the levo has some kind of gluten in it so that's the GPS conclusion to why I get so ill as gluten can effect the ear and have neurological problems. now on a gluten free diet for hasnitmos as well.
My tsh goes up high very quickly due to hasnitmos but it's mainly because I stop and start the levo tablets all the time as endo aint been brilliant with me. I can only tolerate so much levo than i feel like my brains swollen . other dr thinks I'm getting vestibular migranes due to the levo which is causingmy problem s
If anything has gluten in it, that needs to be stated as it's an allergen. Uk medication does not have gluten in it. Lactose although not an allergen is still always mentioned if in meds. I really don't know what your doctor is talking about. Check with Coeliac UK for verification. You have to be eating gluten for at least six weeks for the Coeliac test to work.
The vast majority of medicines prescribed by your GP are gluten free
A very small number of medicines contain wheat starch which contains low levels of gluten. Wheat starch is one of many ingredients so even when wheat starch is used, the overall gluten content of the medicine is very low
In most cases, an alternative medicinal product can be prescribed which does not contain wheat starch
Sometimes medications can cause side effects that are similar to symptoms that occur after eating gluten. Speak to your GP if you have any unexpected side effects
Where wheat starch has not been used in a medicinal product, the product can be regarded as gluten free.
Many prescription medications can also contain gluten. ... Luckily, most thyroid medications are gluten free, but we need to be careful with the various generic brands of levothyroxine(only 1 is gluten-free), as well as liothyronine.4 Feb 2015
That is 2015. As I said gluten has to be stated in other ingredients. I have the List from thyroid UK with ingredients listed and no gluten listed. As I also said Coeliac UK can tell you regarding UK meds not having gluten in. They can be reported if any undeclared gluten.
As far as far as Coeliac UK are concerned all medication in UK is gluten free and it would have to be stated in ingredients.
This question is asked a lot by new diagnosed members of the Coeliac FB group and that is the reply. Coeliac UK are the people to check with as that's a where I get the info from
One of the few medicines which categorically does contain wheat, Wheat Grain 10% w/v, does not identify gluten in the same way as foods are required to. (Yes, I know it is not meant for oral consumption.)
It's for going on skin not ingesting. You have to swallow gluten for it to affect you. Wheat is a separate allergy. I don't know if below has worked. A statement from coeliac uk. If not will type it out as a separate post!
Are you UK based? If it was me I would contact your local PALS or your CCG without hesitation and request immediate, urgent advice. Wishing you well and good luck.
I have tried going gluten free and it made no difference to me. I do suffer with hay fever and had to go to the doctors a few years ago when I ate a peach which must have been covered in pollen (I forgot to wash it) and my throat started to close up. My doctor gave me some strong antihistamines which stopped the reaction I was having.
Coeliac uk say this us a separate allergy and not coeliac disease as it won't damage the villi. Suggest you contact them for a explanation.
The original post was about swallowing gluten in tablets and coeliac uk statement as above is that no UK meds with the correct quality control contain gluten
These are USA where the rules pertaining to gluten are very very different. I put the link to the statement from Coeliac UK, note the proper spelling in uk, about UK medications and the rules for licenced meds 're gluten and having PL 'on their licence number.
There is even a difference in food labelling in UK and also what is and isn't gf. We have gf oats for example that are grown away from gluten containing crops so ok for us.
As I've said the Experts in UK are the Coeliac UK charitable do the research. I think what they said 're UK is superior to US and as soon as I see the WRONG spelling i take with a pince of salt. Please contact them for up to date info!
Further to my edited reply. If there is starch in something, food or drink or meds, if the starch is wheat starch is does not need to be listed in ingredients due to it being under 20ppm which is deemed safe for people with Coeliac disease
So you have not been diagnosed with Coeliac disease then or had a biopsy to see if you have gut damage. That is the only way you would know if gluten has caused internal damage as your villi would be flattened, and you can only get a biopsy after a positive blood test, although you can get a false negative then sypmtoms would come in, and you have to be eating gluten for 2 meals a day for six weeks for both.
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haven't took meds for 6 days and I've been calling everyday. on call dr gonna call me .. 
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