I have seen the dr on my blood result with my TSH being suppressed at 0.004 and my T 4 being 16+ within range. As he said reducing it like before would only cause me to get sleepy again so to stay on 175 mgs Levo I don't feel right at all on any dose never have but only just realised it's the Levo making me feel cr*p , I asked if I could have my anti bodies done , he just said The Endocronologist will do all that, I said does this mean I'm not converting T4 to T3 very well and would I be better on T3 added or Armour? He avoided that question and said if I felt good I would be ok as it is , I told him I do not feel that good! he said have you thought of going on HRT I replied I am already on HRT and still feel crap , he then said oh maybe you have Fybromagelia , do you think he was trying to get out of that I'm not converting mt T4 to T3 well .. I also asked him if I could see an Endo in another area to where I live he said I was only allowed to see an ENdo in Devon ? I thought I was allowed to go anywhere in England! I would like to go to Wales as they have many more ENDOS who prescribe Armour there . My worry is that now they have banned T3 I am going to get stuck being on Levothyroxine and now by the sounds of it im giiven a label of fybromagelia as they won't treat me for not converting the T 4 well and the rest of my life will be disabled with T4 that's giving me so many bad side affects... Does anyone know if T3 and Armour NDT are banned from being prescribed on NHS ? I'm feeling bit down at him saying I have fybromagelia as feel it's an excuse to just brush me to one side and just me shut up so not at all happy on that diagnosis , I went for no tests for doctor to label me with that and do not believe that's what I have and that even if their is even any tests to diagnose anyone with fybromygelia as I never went for tests, I think he is avoiding the fact I'm not converting properly and has labelled me that so he doesn't have to let me know the truth as they banned T3. Feeling very fed up as this means if Endo won't help the rest of my life will not be worth living, I had graves in younger years and missed what should of been best part of my life as the didn't diagnose it for years and now I'm going to feel crap the later part of my life. ..so here's waiting to get Endo appointment which I have been waiting 6 weeks already and still not heard, my dr did chase them up last week so will have to wait I suppose, my B12 was only 287 which I think is low the dr says it was very good, I have ordered quite a lot of vitamins of the lower range ones so will see when I start taking them if I feel better or not !
Is it ok to stay with a suppressed TSH of 0.004... - Thyroid UK
Is it ok to stay with a suppressed TSH of 0.004 and T4 of 16.5 within range? Or will I be over loaded with Levothyroxine ? With side affects
If he hasn't tested your FT3, he cannot possibly know how well you convert. And he doesn't even know that! Which is why he's avoiding the question. He's totally out of his depth! Has no idea what he's talking about, so thinks that 'diagnosing' fibro is the best way out. There are no tests for fibro, which is why no-one can prove him wrong, so he feels safe. Refuse the 'diagnosis'. Tell him you don't want that on your records, because it isn't even a real disease - at least, if it is, there's no proof of it. And, you know he's just saying that because he knows nothing about thyroid. Tell him that. He's not going to make you well, anyway, so what the hell! Do your own FT3 and buy your own T3/NDT, if that's what you want.
Sigh
Greygoose, I will have to say you are wrong on that aspect of Fibromyalgia, yes it is a "REAL DISEASE" it is a connective tissue disease, that affects your muscles. I live in the states and it has been proven to be real, the same as chronic fatigue syndrome, lupus, etc. they have a guideline they go by, pressure points and they run a ANA TEST TO see what your inflammatory marker is. That is how they check to see when you are at your worse. They have medicine for it also; so please DO NOT tell anyone that is not a real disease. Thank you.
Fair enough. But, the OP isn't in the states, She's in the UK. In the UK, they do not have guidelines, and they do not test pressure points - as far as I'm aware. And the ANA test can be used for other things, and is not specific.
In the UK, the NHS uses fibro and other things you mentioned - and by the way, Chronic Fatigue Syndrome is a syndrome and not a disease - are used for 'dustbin diagnoses', meaning that the doctor can give you that 'diagnosis', tell you there's nothing they can do for you, and send you away to rot.
If things are different in the states, I'm glad for you. But, this is a British forum. The OP's doctor needs to do his job and test and treat her thyroid properly, which he is not doing. Do you really think I ought to encourage her to believe she has something she probably doesn't and which will mean the end of her being taken seriously as far as the NHS is concerned? I don't think you fully appreciate the differences between her circumstances and yours. We have to be realistic about these things and adapt to the country we live in. So, please DO NOT tell us how to handle our situation when you don't have to live in it.
Greygoose,
Must say they actually use pressure points to "diagnose" fibromylgia! in UK. They give you low dose antidepressants to help relax the muscles... usually Imipramine. was diagnosed with that years ago and took imipramine for a long time. decided to stop taking imipramine slowly of course. Have been ok regarding the phanthom disease they call fibromylgia. Must add I have had (and still do) B12 injections, supplemented Vit D and iron (after seing consultant) so perhaps these were all needed to "get rid" of fibromylgia...
Indeed when they haven't got a clue they rush to such nonsense so as to feel "justified" in having investigated the patient's problem... A label is given, as you said, and no need to investigate further... job done if so badly done, from their point of view. Same thing for CFD and the rest of useless dignoses for which there is no treatment. How very convenient!
I stand corrected. 
Didn't know about the pressure points because no-one has ever mentioned it before. However, that's a pretty light-weight test, as tests go. I'm pretty sure other things could cause those same symptoms.
Anyway, it's not a 'diagnosis' anybody wants on their records in the UK. And it is a 'diagnosis' of convenience for the doctor! And, I have never seen any proof that has convinced me that fibro is a separate disease, and not just a bunch of symptoms caused by 'something else' : hypo, nutritional deficiencies, adrenal insufficiency, et al.
Sounds like the old tests to see if you were a witch - press a few areas that are bound to be painful in anyone - preferablely with a hidden pin - get a reaction - job done.
I am not trying to tell anyone how to handle the situation, I'm just saying fibromyalgia is a real disease. I too have Hashimoto's, with fibromyalgia as a secondary.
I feel the same on thyroxine, even on lower doses. Deep nawing pain all through my body. Was actually diagnosed with ME at a clinic. Stopped taking thyroxine, slept better, pain gone. I also notice the glands in my neck swell up while I'm taking it. Anyway, stated taking it again and all the same problems come back. Doctor thinks It's all coz I'm worrying about my health. It sucks
If your glands swell, it could be the fillers in the tablets. Try a brand without lactose, corn or gluten, colouring or acacia.
Thanks, I'll have a look into it. It seems to get worse depending on what I've eaten to be honest. Had some fish the other day and it was much worse. I've cut lots of food out. Dairy being one of them. The reactions I have to food seem worse while I'm on Levo though.
Sorry for using this thread but what are the Levo brands not containing lactose, corn or gluten?thanks if you feel able to reply either on this thread or by Pming me.
Can't help with that as I never taken levo only NDT and T3. I believe that there is a liquid levo that is supposed to be hypoallergenic.
Refuse to except a diagnosis of Fibromyalgia if you don't have PAIN in every tendon ligament and muscle in your body, from burning, stabbing, ants nibbling, rats gnawing and drill bits with jagged edges going deeper than there Is, always and more than you would have ever believed you could handle. Anyone who doesn't put PAIN in capital letters at the top of any symptom list doesn't have fibro. Rheumatologists use the tender point test as well as symptoms to diagnose Fibro, at the very least. Your GP is simply rubbish (deleted lots of other descriptions lol)
i told him in a sarcastic voice that thats what they do to shut people up when they had given up testing ! I haven't got Fybro as got no knee reflex surely i would feel that and it would hurt ?
, I have levothyroxine poisoning i think 
and so far I have had an MRI on my back which shows I have got a spine problem that causes my Sciatica , that was not my imagination, I have shoulder Pain to which Dr sent me for an Xray and as that came back clear he gave me a steroid injection and said if it is still sore when that wheres off he will send me to a shoulder specialist. it still hurts if i lift it over my head . I have carpel syndrome at times if i go in freezers and all these pains are not in my imagination and i get endema on my legs and struggle to lose weight and don't even eat much .. that i wouldn't say are signs of Fybro so not in any way excepting that diagnosis lol
Davenoz,
NDT isn't licensed for UK use so you are unlikely to be prescribed it on the NHS. I think you should be able to choose to see a specialist anywhere in England but not in Wales which has different agreements.
The British Thyroid Association say that GPs shouldn't prescribe Liothyronine (T3) without recommendation from a NHS GP.
It may be worth you ordering a private thyroid test to check how well you are converting. Medichecks do #ThyroidThursday discounts thyroiduk.org.uk/tuk/testin...
If your going to do private blood test then go for the vitamin test as well
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular. Will test antibodies, vitamin D, folate, ferritin and B12
Don't start any vitamin supplements before testing, and always stop any supplements with biotin in 3-4 days before any tests. Biotin can falsely affect test results.
All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test.
these were my last test results just over a month ago when i was on 200 mgs levothyroxine before the ones i put n my post above
TSH less than 0.004 miu/L range 0.35- 4.94
FT4 22.5 pmol/L range U 9-19
FT3 5.0 pool/L range U 2.6- 5.7
so T3 was done the 1st test
and this time on 175 mgs no levy taken before bloods nothing to eat TSH stayed the same but said suppressed and T4 had come down to 16.7 pmol/L but they wouldn't do T3 again so not sure what that was this time still shivering when not in direct sun light .
I am not excepting the Fybromygelia as i even said to him , right you mean thats it you just don't know and isn't that something you do when you cant find out whats causing me to feel bad, so why do i feel cold and ill all the time even though all these pains only started since i started Levo but only just realised it must be that the Levy is not suiting me or just not getting rid symptoms ad not really even making my bloods look god . previous Drs had told me it was my age, I m not happy with being labeled fybro and that with out even having tests, i said did he even realise i do not have any reflexes in my Knees as thats what a recent physio had told me, Ive had ferritin, Folate, Vitamin D and B12 bloods done they are all within range although a bit at the lower end also all full bloods where ok apart from basophil was over range but Dr said that is ok with the other bloods that were all normal . Just had my referral to an End come through who used to prescribe T3 mix but not sure he does now with the ban..
I did even say to him I feel like stopping the Levothyroxine as never felt like this before i ever took it, i just felt very sleepy, and was more awake after the Levo 50mg then slowly over the years I have been upping it 50 mgs till I hit the 200 mgs about 7-10 years, i cant remember as memory is shot these days but all the pains started not long after i started Levothyroxine but never even thought it would be the Levo that had caused it up till now, every time they upped it , I had been going through a very sleepy coma like period where i just couldn't seem to wake up.... the Dr said I may go into a coma if i stopped taking them, which to how i felt when on a lower dose he may well be right on that one , but the sleep is all the Levothyroxine has ever stopped. I had really bad Graves when i was a teenager, radioactive Iodine then a part thyroidectomy, never felt brilliant all my life but at least i was awake till it went under, now i can not sleep at night i feel tired all the time and ache quite a bit , Sciatica and general feeling of un wellness fatigued and cr*p. tbh i think being asleep no Levothyroxine would be better than being awake feeling like i do...
You have posted previously and it has already been suggested that changing to NDT is an option. Or adding T3 (but you have already stated you don't do well on Levo). Unless your referral to the new Endo gets you that T3 your only option remains to source either one and self medicate. And many here on the forum do so! My advice: You need to wrap your head around this and move forward - this means becoming proactive about your options and not waiting in vain as you've had nothing but bad advice from your current GP. When you are ready to make a decision you need to then create a new post asking for members to PM you for sources for NDT or T3. You are at a fork in the road now - either continue in the current predicament, or get on with taking charge of how you want your treatment to be.
i am a little scared to do it without supervision but you are right I should do it, Im glad you agree my Dr has given me bad advice so far.. do you not hold much hope that the End will not prescribe it as if you don't I will do it now, he was a prescriber of T3 but not sure if he can under new NHS thing.. ?
If endo thinks you need it you should get it, even though CCG's are trying to prevent it.
Look up your local CCG (eg search CCG Devon or wherever you are) Then search Liothyronine.
This is what my local CCG guidelines are
"The use of liothyronine in the treatment of primary hypothyroidism should be initiated followed specialist review in secondary care. This should be reviewed at three months and only continued if there is improvement in symptoms. In this scenario, a joint management plan should be agreed with the patient’s GP for ongoing prescription."
A lot of your symptoms sound like low vitamins. You really need to test vitamin D, folate, ferritin and B12 and antibodies.
You could ask GP to do this. Say you have had advice from the NHS thyroid support group.
If you have low vitamin levels then you will need to supplement to improve before adding T3.
Interesting, I have just looked up my local CCG and following a meeting on 28th June 2017, this is what it says on the report
"Liothyronine(t3) - the group noted that there is an alternative drug on the market.
The potential cost saving is £100K. The group agreed with the recommendation to implement the policy of routinely prescribing only the t4 product rather than t3; but to ask the Medicines Management Team to review after 6 months based on evidence from patients."
Ironically the logo on the bottom of the report page says
"Inspiring Better Health and Wellbeing"
That would be good if they were looking at French or German T3 - cost €30 for 100 tablets.
But they mean T4 instead
Hi Pascha1 . I am afraid I don't have the expertise of many members on here to answer any of the questions you are asking. However, I was interested to tead your comment about wanting to be referred "to Wales as they have many more ENDOS who prescribe Armour there ". This caught my attention as I actually live in Wales and the treatment of Hypothyroid and Hashimotos is actually dire !!! Labs consistantly refuse to test for T3 even when GP requests it. ( The only time they tested my T3 was when my T4 came back as 18 ( and top of the range was 17 !! ) and lab said I was over medicated......idiots ! As a consequence my Levothyroxine dose is adjusted up and down like a yo-yo and my tiredness and lethargy just gets worse. The most recent response I have had is to refer me to the Chronic Fatigue Department......a bit like your Fibromyalgia referral. The way I see it they are labels they give to people when they don't have the actual expertise or knowledge to actually deal with the Thyroid issue properly. Sorry for the rant😀.
I would be interested to know who, and where in Wales these ENDOS are that prescibe Armour and I hope you get a good outcome from your ENDO appointment.
Just post that you would like a list of Endos in Wales that prescribe NDT some one will give you an email address to get a list from
Hi Pascha1 . Thank you for replying. I did get a list some time ago through Louise but unfortunately at that time there was no good , sympathetic Endo up this part of Wales. Admittedly that was months ago so the list may have been updated by now. 😀
You can post here for guidance on these options when you get there. There is established protocol for switching over to NDT (depending on brand). Or adding T3 (which you've already done previously).
I ordered my own NDT, and my own Low Dose Naltrexone, I'm waiting to see an Endocrinologist in Devon in September. I have antibodies showing I have Hashimotos. But the GP refused any other thyroid test bar TSH.
I'm in Devon and waiting for an appointment with Endo
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