Briefly, my thyroid results are...ahem..."normal" but was found to have high antibodies last year, which my GP didn't seem to think was a great problem. Trying to sort matters out myself I went gluten/dairy free but sadly am feeling worse. I really don't want to go on meds but things are so bad that I thought if there was the chance it would help, I would have to bite the bullet.
So I went to the (different) GP this morning, and ended up in tears. As my results are normal he could see no reason to repeat the tests. I queried at what point would he consider my high antibodies worthy of medication. He patiently and patronisingly said that high antibodies can rectify themselves. I don't know if this is right or wrong but I have read a lot of stuff about autoimmune disease, Hashimotos etc and never, ever heard this before.
Despite the fact that I have had thinning hair, chronic constipation, brain fog, skin & hair that are dry as sticks, no sex drive etc etc, he latched onto my latest symptom, depression/low mood and said that could be the reason for all of the above. He eventually agreed to repeat the tests, but what is the point when he's only going to deem them normal?? He was happy to prescribe Citalopram, which I really don't want and have no intention taking as it has horrendous side-effects but somehow couldn't prescribe something I apparently need?
I'm really at the end of my rope. He made me feel like some whingeing hypochondriac though I assured him I did not want to go on medication but that I feel I now have to.
I KNOW I am hypothyroid but faced with someone with such outdated ideas, who can't think outside the box I am totally snookered and just don't know what to do.
Sorry for the long post
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infomaniac
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I'm sorry you're in limbo, like many others including me.
I asked my GP for an antibody test & told her which one (TPO ab) then ENT doc told me Abs can be raised after a Thryoid op (1 year previous) next ENT doc took notice and agreed it was an autoimmune Thyroid disease but didn't know if it was Hashi or Graves (duh - high TSH & symptoms!) got FT4 & FT3 tests - 'normal' so no action, no antibody test after.
When did you have yours tested? can you ask to have them again to see if they HAVE 'rectified themselves', as they suggest?
I'd be tempted to ask what blood test or actual proof made him prescribe antidepressants??
(Oh could it be that they gain 12 points for a depression diagnosis and 1 for Thyroid, latter with free prescriptions too???) However classic Thyroid symptoms are ignored because of 'normal' blood tests or even positive Thyroid antibodies!!
If you have your 'normal' results please post them here (you have the right to a print out) and don't forget to ask for vitamins/mineral tests too, irons ferritin, folate & B12 (otherwise a private Vit D test from city assays NHS lab only costs £25 for a start).
sorry for my long reply too, keep fighting! - more info on the main TUK site
If this is any help, I'll tell you I how "persuaded" my GP to put me on levo back at the end of Oct. I was bed bound, barely able to get down the stairs, feeling so ill I didn't know it was possible to feel so ill and so depressed I was beside myself and even had to ask a friend to come and stay one night. (and I've had so called ME for 37 years).
It took 3 goes to get him to give in. The first visit he said he'd retest me in 3 months - goodbye. A week later I phoned him and he said he'd be prepared to retest me in 2 months. Third time I asked a friend to take me and I totally lost it with the GP. He patronisingly told me that "if you feel like that I think you should go home". I screamed at him "it's part of it, can't you see that". And forcefully said what I'd said on the phone the previous week "what harm can it possibly do to try the meds and see what happens".
For the sake of a quiet life he gave in. I haven't seen that particular GP since, but I can't begin to tell you how different I feel. I feel like someone has turned the light back on in my head and my life. This week I've been outside my house 6 days in a row. Unbelievble. Off to see Dr P in April.
Just psyche yourself up, forget being polite, nice, friendly. Take a large tissue and lose it. But make sure you decide what you want to say first. You want to try levo. It's cheap, it's relatively harmless and if it doesn't work you'll know after a few weeks.
In my case I knew I was on to something after a few days. I didnt' feel any better, but my heart changed. It had been racing out of control for a year, along with frequent bouts of fibrillation. It stopped. I saw another GP after Xmas and "persuaded" him to let me increase the levo - after he told me my results were now normal and I didn't need to do anything.
The increase changed my world and my life within 5 days. A further, self prescribed, increase 3 weeks ago did the same again.
I won't type my opinion of GPs - but one thing I know is that you HAVE to take control.
I have had to resort to seeking out private help, and for some things even self treatment for a couple of conditions where help hasn't been forthcoming from the mainstream Medical profession, (even though it is commonplace in other parts of the world) but to be honest, I can't routinely advise the same for everyone... Call this a cautionary tale if you like -
You need to be the right type of person inside, not prone to flying off into fantasy or over-reaction, and one who is analytical, and also academic enough to do the research - even though that is very much me, I have still "got it wrong" on one occasion not so long ago - a change of another prescribed drug, not routinely considered to have any impact on thyroid issues at all apparently sent me very hyper, and co-incidentally over the same period my blood pressure went somewhat haywire and unpredictable, seemingly for another, again, unrelated reason... fortunately beta blockers took care of both sudden symptoms in the short term, and once the NDT dose was lowered and levels dropped, I have made other steps to get my blood pressure better controlled and I am now free of the beta blockers - OK, it has all happened without getting my otherwise fairly helpful GP to be too over-critical and obstructive, but it hasn't been easy to handle, and it has knocked me back after I had been rock steady for ages.
Although I am now stable I am still feeeling a little bit "low" on thyroid, so I am busy re-titrating doses aiming at probably a slightly lower final dose of NDT than before because of this ither drug; but, being a lot wiser this time around, it means I will do it all much slower this time, and will react a lot quicker to changes in symptoms in the future - remember, it takes quite a while for T4 levels to drop once you get too much, and if nothing else, it proves I definitely DO convert at least some T4 into T3!
in reply to
picton, i have just read your reply. It helps me today. I agree with your 'right type of person' . Like many left with no choice. Am not too bad at the academic stuff to a point but then as i told the GP (when he said do you think you should alter the dose according to how you feel as you know a lot about it) I would but could be taking the Long/Wrong route and would prefer to be working with a Doctor.
May to November levothyroxine made a huge and good difference believing things would get better with all the vitamins too. But in November hypo symptoms came back I entatively increased.
Have had Graves so am scared and cautious.
Unfortunately for me the Labs stopped testing T3/T4 in November .My TSH was 0.01 last month.
Jumping forward to this week have mix of hypo and hyper mostly hypo but from experience they overlap. It is so lovely to have energy and sometimes that is bad energy.
Today I have not taken any. Am on here today to help me work out what I will do tomorrow. Have any appointment with GP tomorrow but lovely as he is he will likely not be able to help. Will be sometime before app., with Endo.
Your comment 'it takes quite a while for T4 to drop' helped. This was my impression.
Do you think the rise to hyper is sort of insidious?
wyn
in reply to
In my case it did creep up a bit unaware... I had some time ago lowered my Reverse T3 using T3 only to do it, and then I was hyper sensitive about dose, timing and the rate at which I increased it, but since going to NDT, I had become a bit settled on dosage for some months, and I suppose was a bit complacent. To be fair, I suppose this could have happened if I had been on L-thyroxine from my GP, as the change in my case happened when I changed dosage of an entirely unrelated drug, (although NOT exactly immediately, there was a bit of a lead-in time) and the Doctor would have been no more aware of the likelihood than I was, but I suppose the one benefit of the Doctor's reluctance to get even close to overdosing means you don't get anywhere near going hyper, as it's all about dosage by TSH, and using NDT is all about dosing by how you FEEL!
All I would suggest is be extra aware that anything can change how you respond... perhaps even down to what you eat that day, the one benefit of a drug containing T3 like NDT does, your T3 levels will drop pretty quickly if you stop it, although the remaining "overdose" which continues converting to T3 does take a long time while the T4 fades away.
Low and slow whist adjusting, is the way, and keep check on heart-rate and temps even when you are stable in case circumstances makes your needs change. I have to admit, I will miss out a dose at the first sign of problems in future,although I am aware it is possible to confuse too LOW with too HIGH!
BTW, on NDT, my TSH is very low when I feel right... it often will be when on any T3 at all. (My local lab stopped T3 and T4 testing when TSH is in range a long time ago, to add to that, the top of their TSH range is 5.0 too!)
in reply to
Thanks Picton..you explain so clearly..makes me feel my comprehension is not too bad.
Believe there is study that shows better absorption (for want of better word) when levo taken at night. Possibly meaning a lower dose than when taken a.m.
I had wondered about this. It was good for me to take at night but after couple weeks.. did feel over medicated and became nocturnal.
However am going to this again with lower dose and give it longer....as you say long and slow.
Been so difficult to stick to routine..ever..in my life!
Am swinging from shivering to sweating 24 x 7 but so is the weather??
My Lab uses 0.27 - 4.20mu/L I made mistake my last test 14th Feb 13 was 0.02mu/L.
I do not understand my full blood count results. Will discuss with GP tomorrow.
thanks ever so. wyn
in reply to
I take NDT, so I dose over the day anyway - currently doing 3x, purely as it stops me feeling any real peak of the T3 component, which I don't want to mistake for potential hyper symptoms at any time. Many take it only once or twice though.
in reply to
Picton (11minutes ago!) After last message from you I got up to date with supply of NDT on TUK website.
Hi everyone. I feel a little brighter today and have decided I will get myself tested again just so I know if anything has changed. I certainly won't be going back to that patronising waste of space to discuss the results though. It seems I will have to go private to get anything sorted the question is who to go to? I've seen Dr Peatfield & Dr Skinner mentioned a lot of times on here but recently read something about Dr P only prescribing Nutri Thyroid and Nutri Adrenal? Though I would take ANYTHING I thought would help I've already taken Nutri Thyroid in the past and it didn't seem to have any effect.
I'd be very grateful for any recommendations/info of any doctors including Drs P & S.
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