Hi , not posted for a while , I was hoping to get somewhere after getting endocrinologist appointment but hey ho.
Here are my last 2 blood test results.
June ... Free T4 - 11.7 ( 7.86 - 14.4 )
TSH -6.12 ( 0.35 - 5.50 )
At the time I was on 50mg/25mg alternate days .... had lots of dizzy spells
Aug ... Free T4 - 14.1 ( 7.86 - 14.4 )
TSH - 5.41 ( 0.35 - 5 50)
Currently on 50mg daily ..... exhausted all the time , short tempered and tingles under eyes.
Also had a thyroid scan , not spoken to endo about the results of this yet ( was told to ring but can't get through, left a message but still no joy) but when I had it done the lady said it was on the small side .
It just make me want to scream sometimes.
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Johnljc
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Standard STARTER dose of levothyroxine is 50mcg daily
Dose is increased slowly upwards in 25mcg steps until TSH is ALWAYS Under 2. Most people when adequately treated will have TSH around or under one, Ft4 near top or just over top,of range and Ft3 at least 50-60% through range
Was test done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test?
High TSH shows you’re under medicated
Which brand of levothyroxine are you currently taking
Request 25mcg dose increase in levothyroxine to 75mcg
You may need to start on 50mcg/75mcg alternate days
Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine
When were vitamin D, folate, ferritin and B12 last tested?
Also I don't know if my dosage has anything to do with this but when I get warm I sweat excessively and take an age to cool down which is kind of embarrassing because my t shirts are soaked.
Also when I get cold especially hands I take an age to warm up
Almost certainly related. You’re barely on enough levothyroxine to treat a hypothyroid rabbit (vets are much better at treating thyroid disorders than doctors).
You need an increase in levothyroxine. The scan has confirmed there’s a problem—a small thyroid is not a good thing.
I think I’d contact your GP and ask for an increase to 75mcg—see what happens.
So endo must ring this page , had a phone call..... it was stated everything is fine , when I queried tsh being at the wrong end of range , I was told its where it should be and to retest bloods in 8 weeks .... did not ask how I felt ... whole call was rushed... they couldn't wait to get of the phone ... what a waste of time
Oh no! I fear you had a diabetes specialist rather than a proper Endo there—many of them are almost clueless about thyroid disorders.
Is your GP also reluctant to raise your levothyroxine dosage? There’s no reason why a GP couldn’t raise your dose, so that’s something to keep in mind.
I guess the only positive is that in 8 weeks, if you stay here with us and read lots of posts, you’ll soon know far more about thyroid disorders than nearly every doctor you meet, so we’ll do our best to help you phrase the right questions at your next appointment.
You don't HAVE to use the Health Board's choice of Endo, you can opt out and choose to see an Endo of your choice, unless they have changed the rules these days.
Years ago I had moved to North Wales from North Staffs and I started having fits again because I was Epileptic too.
I was a member of British Thyroid then and of course they had lists of which Neurologists we would be more likely to want to see, than the one in the local area.
I had an EEG here in Wales, but the results were totally useless. Then when I checked out the Neuro here I totally refused to see him, his reputation went well before him and I refused point blank to see him. I wanted to go to the Walton Centre in Liverpool.
The Health Board here were not keen on me going to the Walton Centre and I waan't having that and I got the local press onside.
Inside a couple of weeks I was in Liverpool having an MRI on a Saturday morning, follow appt with Neuro a few weeks later. I was soon totally free of fits didn't have any for quite a few years.
Not long after I went to the Walton Centre, it went into the local paper again, because I thought other people might be in the same position as me at some point and might need a hand, so best to tell them that my stance had worked to my advantage.
The next week a letter was forwarded to me from the local Epilepsy Group who I had not known existed.
They were thanking me for getting through to the Health Board because they had been complaining about the same sorry Neuro for years and got nowhere. I went to one of their meetings and the sad tales I heard there were absolutely appalling. So I was happy that they could now get the Walton Centre treatment, they really are outstanding in their field.
When I next needed a Neuro, blow me if the Walton Centre hadn't got satellite clinic on the Bangor Betsi Cadwalader hospital and highly fantastic it still is too. I would never have thought of that, but I am still thankful for it still.
My point is that you can go to another Health Board if they have a 'proper' Endo with the correct Thyroid training. If the one you are seeing is trained in Diabetes, he is no more use to you than your GP and most of those are like chocolate teapots.
Your Health Board needs a good loud complaint, because Diabetes trained
or not, he hasn't a clue how to treat Thyroid and if he is Diabetes trained he shouldn't be treating you for hypothyroid.
That is the Health Board's fault, they shouldn't be employing him to treat Thyroid patients. He is getting money under false pretences in my opinion. But a lot are!
How about asking your local newspaper whether they will put an article in the paper to see whether Thyroid patients in your Health Board area are satisfied or dissatisfied with Endocrinolgy treatment in the area? There might even be a thyroid Group locally. The newspaper may well pass on replies to you.
The thing is that you might help others too, not just yourself.
I would be doing this myself right now if I wasn't moving back to England, it is no good me starting this when I won't live here after November at the latest I hope is it?
But wherever I live I will go back to this if I have to. We need the correct treatment, and Thyroid problems are no less debilitating than Epilepsy is, although they are totally different. And mine isn't a severe Epilepsy, many are much worse than me. They had great Neurologists in the Royal Stoke and I hope they still have and a decent Endo too. If not I will complain vociferously! LoL
I would. Google search some in your area, and read their reviews, then ask your GP to refer you to a specific Endo, of your choice.
I have been out of the UK for 20 years, so I'm not sure if it's possible....if not, perhaps you can afford private (that, or go equipped with private blood test results in hand).
I know that it should not be this difficult, but unfortunately it's a global problem...and, we need to fight for our own health and well-being!
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I've got my results, need some help with interpretation?
Fluctuating TSH 
Fighting for a diagnosis, Thyroid disease or all in my head?
Got my results back - any help?
