I posted on here about a week ago with regards my previous blood results and as the specialist had not ordered a full thyroid test, members advised me to organise this.
Today I had a full Thyroid test, (ultraVit rT3), Parathyroid Hormone, calcium & Gluten sensitivity.
The thyroid ultravit one will take about two weeks, the others a couple of days. I will post once I have the results.
My issue is am seeing an Endocrinologist which I am paying privately for along with all my blood test. I have struggled to obtain all my previous blood results from his secretary and when I do get them they are handwritten. I have requested I see official copies, but at the moment nothing is forthcoming.
My Endocrinologist just seems to concentrating on my vitamin levels and the Epstein Barr virus which I tested positive for.
I have some blood test carried out in August and I had only just had the results they are (again handwritten on a piece of paper)
March 2017 results (GP ordered this)
TSH 6 mU/L (0.27 -4.5)
Free T4 13.3 pmol/L (11-23
Zinc 9.4 umol/L (10.7 -18.4)
Vitamin D 46
April 2017 results (GP ordered this)
TSH 3.7 mU/L (0.27-4.5)
Serum thyroid peroxidase antibody 58IU/ml (<34.0)
The results below are from the Endocrinologist August 2017 results
TSH 4.7
Vitamin D 144
Ferritin iron 39
HB ??? 12.6
My ferritin back in June was 23 and vitamin D 133.
I have posted my previous blood results I. Here and it was advised I had Hashimoto.
When I mentioned that my Vitamin D was over 100 and maybe I should not take my 40,000 IU a week, he said that is measured in USA units? and showed me some document to back this. However I still don't think that's correct.
Iron
He has told me to continue taking the liquid iron he has prescribed (sytron) and suggested I also take Hemplex. I have a very sensitive stomach and can't take normal iron tablets. Has anyone any suggestions what I can take.
I'm having a ultra sound scan on my neck as I suffered neck stiffness and find it hard to swallow, again I suggest this as per advice on this forum.
I'm also going to see if a gluten free diet helps as I being having terrible tummy pains and wind and it never connected to thyroid.
I just feel that I'm suggesting all those thing to him and he's not suggesting them to me, but when I mentioned the blood tests and scan he thought it was an excellent idea.
When I mentioned Armour to him (my GP put me on Levothyroxine 25mg which make me awfully sick, tummy bloated etc) he said you can no longer get this.
I know that until I know the blood results I don't know what medication I will be on, but I don't feel very confident in taking his advice.
Any feedback greatly appreciated.
Best wishes.
Written by
Peanut31
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Peanut31 What is the unit of measurement for your Vit D result? is it nmol/L or ng/ml?
The unit of measurement for UK tests is generally nmol/L and the recommended level is 100-150nmol/L according to the Vit D Council.
The unit of measurement for US tests is generally ng/ml and the recommended level is 40-60ng/ml according to the Vit D Council.
So if your endo is saying it's the US unit of measurement, which is most likely ng/ml, then if your result was 100 you are far higher than the recommended level. Maybe your endo is talking out of his hat!
If you level is actually 100nmol/L then it has just reached the recommended level for that unit of measurement and you should now go onto a maintenance dose. That could be 1000iu daily, 2000iu daily, you may need to supplement in winter only if you get enough direct sun onto bare skin for 30 minutes daily in the summer, some of us need to supplement all year, it's trial and error so it's recommended to retest once or twice a year to keep within the recommended range. You can do this with a private fingerprick blood spot test with City Assays vitamindtest.org.uk/
Also, there are important cofactors needed when taking D3
D3 aids absorption of calcium from food and K2-MK7 directs the calcium to bones and teeth where it is needed and away from arteries and soft tissues where it can be deposited and cause problems.
D3 and K2 are fat soluble so should be taken with the fattiest meal of the day, D3 four hours away from thyroid meds.
Magnesium comes in different forms, check to see which would suit you best and as it's calming it's best taken in the evening, four hours away from thyroid meds
I would remind your endocrinologist and his secretary, that the Data Protection Act 1998 legally entitles you to a copy of your test results. Ask for a print out and tell them you will be along to collect it on ...xxx .. give a couple of days' notice.....
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I couldn't tolerate iron tablets and I raised my ferritin level from 35 to 91 just by eating liver - maximum 200g per week due to it's high Vit A content, also you can include lots of iron rich foods in your diet apjcn.nhri.org.tw/server/in...
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Is your endo actually a thyroid specialist or a diabetes specialist?
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Armour is the most expensive of the natural desiccated thyroids. If he is willing to prescribe, there are others available on prescription, if not then you can obtain non-prescription NDT but best not mention that to your endo. Details of how to get NDT when you have a prescription here thyroiduk.org.uk/tuk/treatm...
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Make a new post with your new results when you receive them, and we can comment further.
Thanks for the reply seasideSusie. Unfortunately, with not having the official blood results I don't know what unit they are being measured for.
I have spoken to the secretary about this and she says she chasing my results.
On my most recent appointment I informed the consultant about this, and he was not happy that I wasn't getting them.
I basically told him in a diplomatic way it was disgusting and he sent an email to the secretary stating I need the blood results.
I have had an email from his secretary claiming that the blood results have been sent to a clinic that he doesn't practice. The clinic they mentioned is not printed on the blood sheets. It clearly states what address to send it to. I have pointed this out to her and I will give it a few more days and then contact her again.
He is listed as a consultant in Diabetes-Endocrinology-general internal medicine
Don't know if this means anything but
MB BCh LRCP&SI (NUI) FRCP Edin FRCP London FACE MD LLM.
I just feel it's me telling him what to do next, and it's only through guidance of this forum and I having a supportive family that are helping with the costs. I can do this.
I had to move doctors as we moved areas, I didn't want to leave my doctors but, they said I didn't live in the catchment area, despite me moving only down the road.
I had been with that practice since birth and I Begged to stay but, no.
The one I moved to has a reputation of not being very good, so it was a case of the best from a bad bunch, others I went to said they didn't cover my area.
He is listed as a consultant in Diabetes-Endocrinology-general internal medicine
So diabetes is his speciality and he plays at pretending to know about thyroid!
How did you find him? Did you get the list of thyroid friendly endos from louise.roberts@thyroiduk.org ? If not then email her for it and find another one. Ask for feedback from members, who will reply by private message if they have any experience of any one you ask about.
You are paying a lot of money for expert advice about thyroid. You wont get it from a diabetes specialist I'm afraid.
The fact that you have paid to have blood tests by this private endo, and they haven't yet been sent to you, is disgraceful. It's not exactly rocket science to copy and paste a set of results from one document to another, and it's not hard for a secretary to type them out. How on earth did she manage to send them to a clinic where he doesn't even practise? They are obviously on your file on the computer or she couldn't have sent them to the wrong place. How come she can't just send them to you by email or print a copy and send them by snail mail. You have had very poor value for your money up to now.
I've emailed Louise earlier this afternoon requesting a list.
I did some research on local specialist as I was getting so down, I was in a black hole. He did have positive reviews.
But, you are absolutely right the more I think about the whole situation and me telling him what should happen and the blood test saga, it is disgusting.
Someone has recommended a specialist in London (I know I can't name names) but he is a thyroid surgeon. I did email his secretary but they want all my results and a referral from my doctors first before he would consider me.
I am based in Lincolnshire, so any appointments in London I would take the train as it would be around 4 hours driving time in the car, please I'm restricted to train times and the prices.
I would be able to drive to Nottingham, Sheffield, Leicester, Leeds.
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