Hi everyone, like a large majority of patients receiving thyroid replacement, i’m not better....and now I have reached retirement age, my symptoms are now being on MY AGE!
Geez oh, i’ve been feeling terrible for years, but it actually took me developing Massive Bilateral Pulmonary Emboli before my under active thyroid was officially confirmed. The young doctor asking me if i never thought my skin was dry? Yes, but when I asked for help, since thyroid problems actually ran in my family, with 3 brothers and my sister confirmed in Dundee, my Glasgow GP suggested I should maybe start accepting i’m an old woman now!!
I’ve had 15 years of endless battles now, even paying a private consultant at the Nuffield in Glasgow, only to be told they can’t let me try other replacement therapies because an NHS directive says not too...big thanks, eh, no, but that just cost £250 to hear!!
Now, before, I do really become an auld wifie, I thought i’d have one last go at trying to find a doctor who will give me the chance of a trial period of Natural Thyroid Extract, does anyone know a “miracle doctor” near Glasgow, who might make “my dream” come true? Pleeeeease????
I’ve had long time patiently waiting to be rescued before “my time” runs out, maybe someone will think i’m worth helping? Still hopeful, Avril
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AvrilA
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Can't tell you of a miracle doctor - but you will find help on here.You can get T3 liothyronine on the NHS in Scotland. I do. It is not easy to do but is possible. You need to show that your TSH is low, your FT4 is well into top third of range and your Ft3 is towards the bottom of its range. You should also show that vitamins are at good levels and that you are not coeliac or have gone gluten free.
It is a case of knowing the basics and being proactive (or pushy).
Woe betide any medic who suggests that, ' maybe I should start accepting i’m an old woman now!!"
Welcome to the best place for thyroid advice...at your finger tips!
And, bravo for having, "one last go"....though I'm not sure you'll find that in a medic's surgery!
I arrived here aged 70 and barely able to function because I' d been wrongly diagnosed and medicated for most of my life....but still determined that there was an answer.
Decades of scans, xrays, scopes and treatments both NHS and private and numerous GPs and a solitary clueless endo failed!
It eventually struck me that, " Doctor knows best" is a fallacy.
My thyroid journey is detailed in my profile....click on my avatar if interested!
I think you may need to do what many of us have done when all else has failed...take control and possibly self medicate.
It was my "last go"....and it worked for me. I'm now 75 and still not prepared to be an " auld wifie"....I'm in Scotland too.
But first....
Do you have any lab results that you can post...including reference ranges. You are legally entitled to request them from your surgery.
I doubt these will be extensive enough to provide the whole picture! Probably TSH and maybe FT4....and certainly no nutrients!
For this reason many of us have private testing done....from the comfort of our own home. Finger prick tests!
To correctly evaluate thyroid function we need to test the following
If you can start by posting any results you can lay your hands on then members will be able to advise on how to proceed....without the advice of knowledgeable and experienced members I would now be very ill...or worse!
You may be lucky as you live in Glasgow as some months ago, the Council had a Parliamentary meeting regarding thyroid gland and options of treatment available for people who had hypothyroidism but who were still suffering on levothyroxine alone.
Lorraine Cleaver was the petitioner and Lyn Mynott of Thyroiduk was also present.
The conclusion was that some people can only improve on a combination of T4/T3, or NDT.
On the face of it the conclusion sounded positive however it still depended/s on endos (few, as we know, are thyroid specialists) both understanding T3 (alone and in combo or NDT) and offering T3 as a treatment....it's maybe a toe in the door but it's not an open door!
I think if we were not cynical before we got a dysfunctional thyroid gland, we certainly are when not given optional thyroid hormones - withdrawing NDT, then T3, Then insisting upon levothyroxine (even saying the last word makes my heart jump) - on levo I was in/out of the A&E I don't know how many times before I found TUK (before HU was invented).
I would assume the NHS would guess I was taking a wrong dose. However, the Cardiologist was contemplating putting an impant in heart - just as T3 was added and I never had to consult him again and I think I should have told him the reason I didn't need an implant - thanks to T3.
The majority on this form have lost faith in the medical professionals, especially if they phone (me) and stated that T3 converts to T4!
As we are all so different, some do fine on levo, some need T4/T3, some NDT and others T3 only. It seems to be males only that make the decisions on how females should be treated - never having the ups/downs females have throughout their lives.
When GPs were "well-trained" we were diagnosed. I remember the first thing Dr P did, was to shake my hand. That, in itself, would inform him if temp/pulse was low or very low.
I just couldn't believe that they also withdrew NDTs too despite its safety well proven since 1893.
First step is to get FULL thyroid and vitamin testing done privately
How much levothyroxine are you currently taking
Do you always get same brand
Which brand
What vitamin supplements are you currently taking
When were vitamin levels last tested
Presumably as thyroid disease runs in the family this is autoimmune thyroid disease also called Hashimoto’s diagnosed by high thyroid antibodies
Have you had coeliac blood test done
Are you now on strictly gluten free diet
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12 at least annually
Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
Ask GP to test vitamin levels
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Is this how you do your tests?
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
If TPO or TG thyroid antibodies are high this is usually due to Hashimoto’s (commonly known in UK as autoimmune thyroid disease).
About 90% of all primary hypothyroidism in Uk is due to Hashimoto’s. Low vitamin levels are particularly common with Hashimoto’s. Gluten intolerance is often a hidden issue to.
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Doctor in a Million!!!
Anyone know of a private doctor who can prescribe NDT?
Hyperthyroid and depression
