Hi folks your posts are all very interesting and encouraging but I have an important Q
GP doesn't want to know and talked vaguely about T3 "hmm there's something about that .....the Americans talk about T3" followed by shrug of shoulders and goodbye 😡
I've deciphered all my results and guess what "all within normal range" ......so that would explain why I'm bouncing with health!
I'm clearly and consistently unwell
(I'll not go into the many details - it's on my profile) but here's the big Q - if I go for Private testing who's going to take a blind bit of notice of the results and subsequently prescribe ??
That doesn't seem to happen here in N.I.
Private and NHS don't seem to link up
very well especially with elective issues.
Am I then down the continuing costly private path for medication OR is it a case of my GP accepting the results and prescribing the necessary ? Doubt it !
Many thanks folks
Susan- mac
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CCSP-27
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I was thinking this yesterday. Is it worth going private and paying to get t3 tested only for then the NHS not to suscribe the necessary medication.. I'll follow your post . I'm at a loose end myself x
Even if your Free T3 is low, I doubt many will prescribe T3 because the guidelines states that only levo is to be prescribed and that it converts to sufficient T3. Besides the company that supply the licensed T3 in the UK charge about £250 per month to the NHS. Whereas T4 (levo) is about £2.
I've looked on your Profile and there's no thyroid history. Just your name:
You have two options. You can source your own thyroid hormones, NDT or T3. For that info you have to ask for a Private Message to be sent to you with information.
For instance if you have a Private Prescription for T3 in the UK will cost you over £250 per month. Extortionate is the word used as a better T3 might be sourced outwith.
If you do source your own, you can get the GP to take your blood tests - he doesn't necessary have to know what you are taking as he will only take notice of your TSH. Some only do TSH and T4. You can always add T3 to a reduced T4. In that case your T4 will be lower due to the T3.
I must admit it is a struggle when unwell with hypo and it comes as a shock to know the doctors aren't au fait with clinical symptoms but only diagnose and tell you how you are by the TSH only. Most like to keep it somewhere in the range and that could be nearer 5 than 1 or below as most of us feel best around 1.
I'm sorry you are still feeling bad at present and hope your health improves soon.
I must get that profile posted - it's very complex so it'll take me brain power and my cognitive skills have a short daily span!
In short - Hypo for 32 years but I've been long before that - had a goitre 38 years ago - nothing conclusive ??
Raised BP 2 meds -
Statins for now nonexistent raised Cholesterol!
Small PFO - no surgery elected
Brittle Asthma - resistant to steroids
Bronchiectasis as result of 48 years dodgy lungs !
Multiple brain lesions - big Q - no answers
Large suspect AVM R frontal lobe and behind it a suspect benign mixed glioma for which I've had a cranial biopsy - again not conclusive (I asked for the Path report)
3 AEDs two of which I'm tapering off - suspect Epilepsy but only because of two major Grand Mals (Tonic Clonics) one being an emergency 'Status' and God forbid there wouldn't be a label attached !
Surgeon stumped ? Neurologist stumped?
Neuro Radio stumped ?
GP almost inert and completely stumped?
I'd love to know the connections between them all ???
I honestly feel the problem starts with my Thryroid and the associated auto immune things that it causes ???
I'm really weary being my own detective !
I'm a voluntary counsellor and actually enjoy helping folk.
In the middle of all this I am still running 2 Royal Academy ballet schools and 4 staff with over 200 children some of them vocational- I'm not able for it really but trying to preserve my income.
I'm exhausted all the time but "it's the Meds" NO it's not !
I'm just constantly unwell and very challenged with it all.
I've been watching the posts re Thyroid stuff and I'm not sure where Hasimotis comes in - maybe I have that ?
Do you think a Rheumatologist a Endrochronologist or both.
Many many thanks in anticipation of your help - how you'll make sense of all the above dear knows !
I'm labelled 'multiple co morbidities' !!!!
Why oh why do all the various med disciplines not connect/communicate
I've never used them personally but I know some members have.
Some private testing can be done with finger prick testing. You order a kit to be sent through the post. You follow the instructions on how to provide the blood samples - all necessary equipment is provided. You then post the samples back again using guaranteed next day delivery. (I'm assuming this must be available from N.I. to England.)
More complicated private testing can be done too, but it will require blood samples to be taken from the elbow to fill a test tube. Depending on what you order and from which website, some tests include phlebotomy in the price, some don't and you have to find someone to do it for you. Phlebotomy is often a sticking point if we have to arrange it ourselves, but if you need it you can ask for suggestions in a new question on how you might get it done without breaking the bank.
If you are prepared to self-medicate... Thyroid meds can be bought online without a prescription. If you can tolerate the cheapest thyroid meds (many people do) you might end up paying about £20 or less per 100 x 25mcg T3 (from Greece or Turkey), or £100 or less per 1000 x 1 grain Thiroyd or Thyroid-S or T.R (all from Thailand). If you need more expensive brands the prices can go up a lot.
Susan-mac, there is no guarantee that a NHS GP will accept or act upon private thyroid results. If you want to know whether FT3 is high or low, or whether you have positive antibodies, sometimes the only way to find out is to test privately. The results may indicate that thyroid is not an issue or, if it is, may incline you to make dietary changes if you have positive antibodies or to self medicate if your GP won't prescribe.
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