I was originally diagnosed as Hypothyroid in UK May 2000. Moved to France Jan 2008.
....I'd started this afternoon [the book that is] , on here - then lost the lot to-ing and froing to pdf with test results from lab-site where I can download my results. Now I can't get back to desktop downloads - google has taken over my computer. no wonder I get confused all the time. The locum doc actually listened to me - my own doc doesn't - just says I'm anxious - its normally just TSH he asks for but she, the locum asked for:-
ANTICORPS ANTITHYROGLOBULINE
TOTALE T4 - but then she crossed that out before she gave it to me.
T4 Libre
TSH ultra sensible
T3 Libre
Numeration FS - not sure if this relative to Thyroid or my "blood disorder" doctors are trying to get to bottom of and originally diagnosed elsewhere in France in 2012 - before spontaneous aneurysm and brain haemorrhage Mar 2013.
87.5mcg Thyroxine - based on TSH, amount has varied sometimes over all years but always 100 in UK based on once annually blood test. Here 2008-current is quarterly tested.
75mg Kardegic powder - since brain haemorrhage [blood thinner]
LP 160mg Propranolol - for strengthening vein/artery walls - seems like a steroid because I have put weight on quite quickly where I had lost a lot previously also quickly.
VITc daily drink or yogurt type desert - prescribed for about 6 months but have now run out of stocks and doc doesn't re-prescribe.
I also have cirrhosis - cancer/alcohol et fatty liver ruled out by numerous hosp exams. Next MRI next Tuesday and see my own doc next Monday to discuss blood test results.
Any help/advice given would be appreciated. I'm happy to answer questions if relevant and need be.
All I know is everything is very complicated. BTW I've been frozen cold for weeks now - even with heating on.
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SAMBS
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Others will comment. Propropanol is a beta-blocker to keep heart rate under control and this is a link with explanations. I do know that betablockers can interfere with the uptake of levothyroxine but sometime some people do have to use them. I would take them 4 hours apart from levo. Or any other supplements or other medications.
You are very hypothyroid with a TSH of 6.99. It should be around 1 or below. An increase in levo is needed immediately. Your dose is too low. As is your free T4 and Free T3. It would appear you have another endocrinologist who doesn't know is arm from his elbow. Insufficient can lead to problems with heart etc.
You have to add T3 to your T4 to bring these up towards the top of the range.
Always get a blood test for your thyroid gland as early as possible, not having taken levo or other thyroid hormones before it. Take hormones afterwards. Also ask for vitamin B12, Vit D, iron, ferritin and folate to be tested as we are usually deficient.
I believe in France they don't prescribe liothyronine (T3). T3 is the active hormone required in all of our billions of receptor cells. T4 should convert but if you don't have sufficient prescribed it cannot provide sufficient T3. We can live without T4 but not with T3. You can get powder Vitamin C through Amazon, and you only need a 1/4 to 1/2 teaspoon daily which I think is essential for you.
Up your dose of levo and the last thing Endos should do is adjust your levothyroxine or any thyroid medication just due to the TSH. Wrong.
thanks for info Shaws - my endo is looking after liver only. No meds from her just mri's and wants to see new blood test results at next consult in April. My GP is only one to treat my thyroid and these are 1st T3&4 test/results with him- he will see them on Monday on his return from holiday. He doesn't believe in T3/4 tests according to someone else english I know here. I didn't know either till I found this community v recently. I will copy and paste all info given here - as an aide memoire for me.
also did I say above I have quarterly blood tests for thyroid and have since Jan 2008 - but only been for TSH. I take propranolol at night as I take Thyroxine and Kardegic in mornings. Thanks for all the tips and info.
Shaws it's NDT they don't prescibe in France, because it's illegal! You can get T3 from any GP or endo that is willing to prescribe it - if they know what it is, that is!
The advantage is here that it's much, much cheaper, so they're not going to refuse it on grounds of cost.
SAMBS, you are freezing cold because you are undermedicated. TSH is high because FT4 and FT3 are low. TSH is comfortable for most people just above or below 1.0 with FT4 in or towards the top 75% or range and FT3 over half way through range. I think you need to increase Levothyroxine by 25mcg and retest in 6/8 weeks as you may need a further increase.
Antithyroglobulin 23 would mean negative for autoimmune thyroiditis (Hashimoto's).
labtestsonline.org will explain what your other blood tests were for. There may be a French site but if not use the UK site.
thanks Clutter - I forgot to write but expect you and shaws realised the the figures in brackets are the (parameters) they use for 'normal' readings. As said i'm going to print your replies to help me and will certainly follow links you gave me. Thank you both.
hi gabkad. I've still got some 100mcg from before doc lowered to 87.5 last summer, so think I'll start those from tomorrow till I see him next week to discuss results, fortunately I went and asked for the prescription for the blood test and saw a locum - she wants me to see the doc on his return next week. The appt I had for Tuesday clashes with my next mri (whoops I'd forgotten that!) , so it will be Weds am. I was tested in 2014 for Hepatitis and cancer - both ruled out.
Platelets low because was diagnosed in 2012 with a blood 'disorder' - neither red nor white cells doing what they should. Perhaps its the thyroid problem at the bottom of it all - or having been massively over-prescribed different drugs, since was diagnosed Type2 diabetic 2010 approx and metformin didn't agree with me after a spell on it - that affects the spleen and blood cell production.
This is why I said I could write a book...because there's more and I don't want to bore everyone.
I'm pretty certain doctors here in France can prescribe T3, worth finding out. And high dose vit C is good for strengthening your immune system generally, I take at least 4 grams a day.
Yes, of course they can! If they want to. But a lot of them don't even know what it is! I got it from one of my French endos, who said : I'll give it to you if you want it, but it won't do you any good! lol
Hi Linda, I'll ask doc about vit supplements again - this is my new doc, but he did give me an ordnance for the pharmacy for vit 200ml Clinutren fruit drink (250 kcal 8g de proteines - and/or Clinutren Dessert HP/PC 205g Tubs. I of one or other daily. Being prescribed its been put under one of my 2 ALD conditions., but its only for VitC - don't know know if I have other vitamin deficiencies, forgot to ask for those on blood test, but due to personal circumstances I had its possible there are.
As you know docs here can be a law unto themselves, neither one I've had here have tested for more than TSH for the thyroid, dosages always being changed. However, they are keen to prescribe anti-depressants, as soon as you start asking questions about the how,what or why.
You are described as anxious - I've seen that in a letter my doc up here wrote to show department consultants - I'd only wanted to see a neurologist for my BI and its effects! Instead I ended up with a battery of appointments for the local hospital to conduct what must be every test known to man! Now back at square one - I just want to know what's going on with my health (circumstances can also be stress inducing, which doesn't help any condition) I'm beginning to think over medication especially last year may be at root cause of new thyroid test results .
But how you get over living with a different culture, mindset and language, and no support, except on HU is not exactly child's splay. Thanks for your interest and answer though.
I've never had a problem getting tested for FT4 and FT3, I just ask for them. One doctor tried to tell me that FT3 didn't exist, so I showed him on another test that it had been done. So then he said, ah, yes, well, but only a specialist can interprete it! I said, I can interprete it! So he tested for it.
I don't understand what you mean by 'I'm beginning to think over medication especially last year may be at root cause of new thyroid test results'. Do you mean over-medication with levo? Because I can assure you you're not! Or do you mean on other things? In which case, you could be right!
Hi Grey, yes you read it right. Its marked up by the lab with the * as needing attention., as is the TSH result. as are 3 other things that were tested and are at start of results I posted. Unfortunately the boxes for replies on here aren't wide enough to copy results as shown on the pdf, so they got somewhat squashed up and pushed onto a line below.
Tell me please, what is NDT? I did read about Hashi's a couple of weeks ago and just thought, wonder if I've got that! I'd better read it again. My brain, confusion and vision is getting worse on an almost daily basis. Everythings slowing down so much, I seem to spend nearly all day on computer now cos my email inbox has so many from HU - not that I requeted to follow it all - just wanted to be on here and decide which post I'd look at - now I get every single new post and replies all sent to my mail server (Yahoo) I currently have 655 unread! Its crazy! Thanks for your reply above also.
Yes, I think it does need attention! I've never seen such a high figure - I didn't even know that measure that high, usually they stop counting at 2000.
So, what to do about it. Not much chance your doctor is going to know. Some people find that going gluten-free helped lower their antibodies. But in any case, you need to lower your TSH - as low as you can - like zero would be a good number! And the only way you're going to do that is to get an increase in your dose - the dose you're on at the moment is laughable.
NDT is Natural Desicated Thyroid, made from pigs thyroid. It contains both T4 and T3 and everything else contained in the thyroid, so is much better for some people. However, it isn't always good for Hashi's people - I did very badly on it. You might be better off with some T3 added to your T4.
As to the number of emails you're receiving, you can change your settings so that you only get the ones you want. Click on the little Arrow beside your name at the top of the page. A drop-down menu will appear. Click on 'account'. That will take you to a page where you can chose the notifications you want to receive.
GreygooseI sorry for delays but I'm going to reply to you and clutter together from both your replies of 5 days ago - it simpler for me - hope ok with both of you. as only just come back online today to look at my emails 999+......yuk and enjoy a cup of tea 1st in 3 days.
I've not been well - been coughing alot lately but suddenly developed chest infection again - monday night couldn't breathe properly so at 8.30tues am called the doctor out...told he'd come about 12.15 - he arrived 9.15 with his trainee doc as well. Her English is better than his. He sat himself down at my desk, I was on the settee with back to him - she listened to my chest [breathing had eased from during night] but was still noisily congested and looked down my throat, made me say aagh - you know the procedure - I don't remember if she took my BP or not. She was talking to him in French of course, I don't know what was said. I did ask if he had seen my blood test results for the thyroid and he said yes. I also asked him to ensure Dr? haematologist, got a copy for the anti result and blood count and also Dr? the ends specialist I am under for the liver cirrhosis. As she is endocrinology, I presume these thyroid readings would also be of interest to her. I have an mri booked for next month for her for next consult, which may perhaps be sooner now! I hope. Anyway doctor was non-committal in his reply. He's probably not happy that I got that thyroid blood test done off my own back. I told him I'd forgotten to ask for Vit tests also. Result at end of home visit is he leaves a prescription with me for:-
Levothy 100mcg CPR. 1 box 30 - I daily
UVEDOSE 100000UI BUV AMP2ML x 1 - a single monthly dose of vitamin -I think its D - only thing is because have slept on-off for 2 days not taken dose yet as apart from knowing I have to break both ends of ampoule to release liquid - don't know if it should be poured into some water in a glass or what. I was told but have forgotten.
Doliprane 1000MG CPR EFFV- known in UK as paracetamol - take as needed - its effervescent, only ever taken as tabs before. NOT Taken any
AMOX/CLAV-ACIDE amoxicilline- acide clavulanique 1g/125mg - its powder in sachet-dose - I morning -1 evening for 8 days. Had 1 sachet so far
PREDNISOLONE - 20mg - 2 in the morning for 4 days - I don't want to take these after reading the leaflet which I only understand a little of.
BRICANYL TURBUHAL 500Y 100 DOS - it resembles an inhaler, I breathe in while turning bottom till I hear a click - I think that gives me 1 dose - but can't say I was aware of getting it - though chest has eased for breathing.
I am again concerned at the amount of drugs ending up in liver - where toxic blood is then passed up to the brain - knowing too any many drugs are toxic for the liver - but are all these necessary - you should see the bag of unfinished anti-dep drugs I've got from last summer - when I stopped taking all except levo, kardegic & propranolol, then I started feeling better - but now the Thyroid has caught up with me - 15 years ago I was diagnosed and unknowingly to me - doctors seem no better out here than I've been reading they were in UK.
It would be nice to think my Doc out here has just had a wake-up call and him and the specialists will start listening to me instead of just keeping prescribing willy-nilly.
Perhaps I should see a neurologist or psychiatrist - it was help with my BI effects I first went to the doctor here for 13 months ago. It will be 2 years next month on 15th when I had my aneurysm and brain haemorrhage.
I am the one who knows how my body/brain feels/reacts -
sorry Its taken about 2 hrs hours to get this far writing.
Ok! Wow! What a book! lol So, let's take this point by point...
You said earlier that you thought over-medication last year might be taking it's toll on you now, and I think you're right.
kardegic is an aspirin based médicine, which isn't recommended for hypos because it lowers T4 concentrations in the blood.
propranolol is a beta-blocker which also diminishes the effects of thyroid hormone
So neither of these should have been prescibed for you without keeping a close eye on your levels!
Now for what you've just been prescribed :
UVEDOSE is vit D3, just break the ampoule at both ends and let it run into a glass of water, and drink. They hand these things out from time to time, it's supposed to be every two months, I think, but after a couple of prescriptions they tend to forget about it. Just drink it anyway, won't do you any harm but will probably do you a bit of good. You're bound to be low in vit D.
There's nothing wrong with fizzy paracetamol, it's faster acting than the tablets, absorbed faster. Just take as needed, but don't go higher than the prescribed dose.
AMOX/CLAV-ACIDE amoxicilline- acide clavulanique is an anti-biotic. Take as prescribed but don't stop the treatment without finishing the course.
PREDNISOLONE is a steroid. Here is the PIL in English :
BRICANYL TURBUHAL, as you've probably gathered, is just an asthma inhaler.
You should tke your bag of unused meds back to the pharmacy to be disposed of correctly, get them out of your way. I know, French doctors really do go over-board when prescribing. And then they complain about the 'trou dans le sécu'! It's not surprising, is it!
I don't know why you would expect doctors to be better in FRance than in the UK. Big Pharma controls medical schools everywhere! But you are Lucky to have a doctor that will do house calls. You would find one to do that round where I live!
As for toxins going into the liver, most of what you've got there are only for temporay treatment, not long-term like the levo. If you need relief then you need relief, no point in suffering. But whether or not you consider the antibiotic and the steroid necessary is up to you.
If you need anything translated, don't hesitate to ask me. Just pm me. I have worked as a translator in the past.
So, seems to me that what you need now is plenty of rest and good nourishment! You are bound to be low in several nutrients with the hypo and all the médicaments you took last year. Has your doctor tested any of them? Might be a good idea to ask.
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