Hi, I've been around reading but not posting much.
Have been continuing with T4/T3 combination but still symptomatic.
Read ISTH book and have been slowly upping T3.
I had a last minute appointment come through to see Endocrinologist, they must have forgotten and left it 14 months not 12, which I was fine with as its a pain arguing with GP as Endo just wants to reduce dose because of TSH.
So he asks how I am, I say 'pretty much the same still very tired and still have hypo symptoms.
Endo - What are you taking now?
"150mcg T4 and 25mcg T3 (I had recently upped to 37.5mcg but knew it would make things worse)"
Endo - Looked puzzled, so your GP didn't lower your dose?
No I asked to stay on 150mcg as last time we dropped my TSH didn’t change but my symptoms got worse.
I think my GP was a bit embarrassed as they hadn’t acted on the Endos letter for 5 months and on the bottom in bold was that he wanted my dose reducing (that’s another story all together)
Endo – Pulls up his letter, my recommendation was based on 50mcg, whoever had typed his notes up had missed the ‘one’ off. So he was embarrassed, pulled up his note sure enough it was 150mcg.
He then credits my GP for knowing what to do.
I laughed inside OMG.
So after that he went on about how TSH should be in range and it wasn’t worth testing T3 because its only in blood for 6 hours.
I just counter everytime that a dose reduction increases my symptoms, I’m not over range in either T3/T4.
I said I wasn’t feeling better in relation to comments about being slightly over medicated.
He offered to do bloods, a asked about cortisol as he was looking for other causes for symptoms. He wanted to do calcium as I had been taking a lot more vit D than he was prescribing. So disappointing this has moved from 57 to 66 in 2 years.
Results:
TSH <0.01 mui/L (0.3-5)
T4 17.0 pmol/L (11-22)
T3 5.9 pmol/L (3.1-6.8)
Vitamin D 66
Cortisol 421 nmol/L (145-619) This was taken 09.30
Alk phos 75 u/L (30-130)
Adj Calcium 2.41 mmol/L (2.20-2.60)
Albumin 46 g/L (35-50)
Phosphate 0.87 mmol/L (0.80-1.50)
So to the bombshell of the appointment.
Endo – so do we prescribe your T3?
No, I buy it off the internet.
Endo – How much does it cost?
About $17 per bottle (I’m wondering where this is going),
Endo - Oh, that’s not right
Previous endo said he couldn’t prescribe it if he wanted to, and I said it costs NHS hundred of pounds. He looked at me blankly.
Endo - Before you run out speak to my secretary and we’ll give you a prescription.
I couldn’t quite believe it, was it because I’ve been taking my own and am still here and not over medicated. Was it to make up for the mistake, who knows?
I will add more thoughts, but I’ve already had the call from the GP to pick up new prescription.
Does anyone have a copy of the research paper that dismisses TSH as the best way for dosing and the arthritis issues.
I’m going to make an appointment with GP do discuss as we have done this experiment before, my T4 will drop TSH will do nothing because I’m taking T3 and my symptoms will worsen.
I’m loosing the will to fight any more.
I really only need the GP/Endo for blood tests as I cant afford private and GP very rarely gets the T3.
Sorry this was meant to be short.
Thanks to everyone on here who has helped me get this far.
Written by
tzracer
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Sorry finally got a bit of free time, I asked GP for Antibodies test but lab refused as I already had a hypo diagnosis.
I'm not sure I have Hashi flares as there haven't really been big spikes in results.
Not sure if my mum has had TPO tested will check.
Endo upped vitamin D from 800iu to 1600iu which I know is very little. I had been topping that up with 5000iu vit D and K2 mk7 when I could afford it, but saw little change.
I have some sublingual 4000iu Vit D to try.
I take Magnesium Chloride drops in my water bottle across the day.
I have been making Kefir to try and help gut micro biome
Will try again to get ferritin and Folate tested, not been done for a long time.
My B12 was >2000 when last tested but I had been self injecting to bypass any absorption issues, haven't injected since Aug 19 to see how much it may have dropped.
Not tried gluten free diet.
'Brilliant to be getting T3 on NHS'.
Yes, but there's a part of me that feels bad knowing it costs the NHS so much. If I could get tiromel at over the counter prices I would continue myself, I've gotten used to buying it and don't know if the Endo is doing it so he feels he has the control.
I know I can always go back to buying it if he restricts. I may ask for 5mcg tablets so I can try spreading out across the day.
Most people get 20mcg tablets and cut up with sharp craft scalpel into 1/4's
Morningside Healthcare only just launched 5mcg and 10mcg tablets
Sigma Pharma 5mcg is £120 for 90 tablets on private prescription.......but only available as "special prescription" on NHS and 3-4 times the cost of private prescription
Another clueless Endocrinologist ... what are they teaching them at medical school? Don't lower your dose I know people here and in the US who have had a suppressed TSH for years because they take T3 only and they are fit and well. You doctor should be looking at your T4 and T3 not the TSH ... the NHS need to change the guidelines for Thyroid testing because they are keeping a lot of people ill in the UK.
Totally agree. The NHS guidelines have recently been re written and all the research and input from Thyroid UK not really factored in or just ignored, its going to be a terrible time for future sufferers.
GP's are struggling, labs regularly overide requests if TSH is in range, you may get T4 but little chance of T3.
Keeping people ill sadly, is the way the pharmaceutical giants want it.
It is possible one of the papers written by diogenes and his team will say what you need. Hopefully, diogenes himself might suggest something but this link takes you to a list of their papers on the Thyroid UK site :
Be aware that TSH in research papers is often referred to by a different name - thyrotropin.
Another source of info that might help is the Thyroid Patients Canada website. I would suggest looking at two sections of the site - "Testing Policy", and "TSH Test":
Just because they are lactose free, doesn't necessarily mean they would suit you. So many people react badly to Teva.......guessing it's the mannitol used instead of lactose
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