Choosing an Endocrinologist

[Rocky]

I have finally been referred to an Endocrinologist after having fluctuating levels of TSH after many years of being stable. My neck also keeps swelling up and I feel like I have a lump near my collar bone on one side. I was asked how I know I have Hashimoto's and I told the GP that I have antibodies which confirm I have it, and so did my Mum and also my Daughter and Great Niece have it too. She said she would refer me back to the Haematologist who has diagnosed me with Autoimmune Polyglandular Syndrome Type 3 in 2019. I said the Haematologist was dealing with my Pernicious Anaemia and had signed me off. She asked who had been looking after me for my Hashimoto's since 2008 and I said the GP. She was really shocked that I had never seen an Endocrinologist or being managed by one. I have to say that I am not shocked!! My question is that I am in the Sefton/Merseyside area and have the list that Dionne sent me. I will get sent the referral letter where I can pick a hospital. Are you then allowed to ask to see a specific Endocrinologist at that hospital?

[SeasideSusie Remembering]

I suppose you can request to see a specific endo but you could end up seeing one of his "team".I think the only way you can be sure of seeing your preferred endo is to go private. I once saw a specialist privately (not thyroid related) and after the initial consultation I asked him if I could see him on the NHS and he was happy to transfer me to his NHS list. However, to make sure I see him when/if re-referred, instead of seeing him at our main hospital (50-60 miles away, I live in a rural area) I ask for an appointment at the outreach clinic at our small community hospital which I know he takes himself, never one of his team, but you have to wait longer as the clinics are only held once a month, sometimes longer.

[Rocky in reply to SeasideSusie]

I will see what options I have when I get my Hospital referral letter. I am still in shock at even being referred to an Endocrinologist

[SlowDragon Administrator]

Recommend getting FULL thyroid and vitamin testing done BEFORE seeing any thyroid specialist ...otherwise first consultation is waste of time

Are you on levothyroxine?

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

What vitamin supplements are you currently

Low vitamin levels are extremely common, especially with Hashimoto’s

Ask GP to test vitamin levels and coeliac blood test too ....if not already on strictly gluten free diet

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 .

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

List of private testing options

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test

thriva.co/tests/thyroid-test

Thriva also offer just vitamin testing

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code

thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk/

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

[Rocky in reply to SlowDragon]

I have recently had my thyroid levels checked in A and E and my own private test by Medichecks. They included T4 and T3. I am on 150mcg of Levothyroxine and monthly b12 injections for my Pernicious anemia. I also had my Vitamin D levels checked and it was 70 and I take Calcichew 3 times a day as recommended by the Hematologist. I have got a Biotin B complex ready to take as recommended on here and a Magnesium spray. I have had to delay taking them as I had an over the range Hba1c test and had to have it retested after a month. Luckily it had dropped by 3 so thank goodness I don't have Type 2 Diabetes. I also had a Thyroid antibodies TPO test when I was first diagnosed which confirmed I have Hashimoto's. My GP isn't interested in extra tests like Vitamins and weren't much bothered about letting me have my yearly Thyroid blood test

[SlowDragon Administrator in reply to Rocky]

I have recently had my thyroid levels checked in A and E and my own private test by Medichecks. They included T4 and T3.

I am on 150mcg of Levothyroxine and monthly b12 injections for my Pernicious anaemia.

I also had my Vitamin D levels checked and it was 70

So what are your most recent thyroid results ?

Do you always get same brand of levothyroxine

[Rocky in reply to SlowDragon]

My test was with Monitor My Health

12/02/2021

Your result is TSH 0.69 mu/L

TSH levels normal (normal range 0.27 - 4.2 mU/L)

Your result is FT4 22 pmol/L

FT4 levels normal (normal range 12 - 22 pmol/L)

Your result is FT3 4.8 pmol/L

FT3 levels normal (normal range 3.1 - 6.8 pmol/L)

Test done in A and E on 29 Oct 2020

TSH 0.69

Free thyroxine level

25 pmol/L N/A

FT3 (free triiodothyronine) level

4.4 pmol/L N/A

They had no ranges for the T3 and T4 tests at A and E and I have asked for them and been told it doesn't say on the report

My most recent test done at my GP's on 26 Feb 2021

TSH 0.69 miu/L range 0.49 - 5.23

I have just recently changed to Mercury Pharma Levothyroxine from Accord and have been on it for 2 weeks. I was having these problems before I changed brands

[Wired123 in reply to Rocky]

I would say your results are similar to my old results with T4 top of the range (or above) and TSH below 1 (which is the goal), but mid range T3.

To me that sounds like T3 conversion issue, so I suspect the Endo will reduce your T4 and introduce T3.

This can be life changing as others on here have experienced.

Go to the appt with a list of all your symptoms.

Read up about T3/Liothyronin treatment on here (look at my old posts if you want) and also Paul Robinson’s website and books so you are fully knowledgeable at your appt.

[Rocky in reply to Wired123]

Thanks for your advice and I have thought about conversion issues after reading others posts on here. I will read your posts and go on Paul's website too. I will definitely be going armed with information too

[DoeStewart]

Hi Rocky, I also live in the Wallasey/ Merseyside area and requested the list of Endos from Dionne, I couldn't see any that are in our area at all. I have often thought about going to see someone privately but would have to travel a distance to see a "decent" one. I would be interested in who you get to see and your thoughts. I am just so fed up being treated by my TSH by GP. I wish you well on your search and good health.

[Rocky in reply to DoeStewart]

Thanks and I will post on here once I have been to the Endocrinologist

[Hedgeree]

Hi Rocky,

I also live in the Merseyside area and I'm in a similar situation as you and DoeStewart.

I've also got the list of recommended endos from Thyroid UK but unsure who to select from the list; as DoeStewart says there doesn't seem to be any in our immediate area.

Also I'm at an early stage and still don't have a diagnosis yet as I'm still trying to get my gp to acknowledge I have a problem, possibly secondary/central hypothyroidism as my blood results (persistant below range FT4) and symptoms seem to indicate this.

So I'm unsure at the moment if I should bypass my gp and go to see an Endo privately.

I too am also interested in who you get to see and what replies you get to your post.

Take care and good luck in your search.☺

[Rocky in reply to Hedgeree]

Thanks and I too am fed up of not being listened to and GP's and A and E staff trying to answer your questions when they know nothing about Hashimoto's. It's a poor show when we know more than they do, but I have to say that is only thanks to the lovely people on here. I will post once I have had my appointment

[Wired123]

For anyone who can afford it or has private medical insurance please go and see a private Endo. You will get treated much faster but only use one from the Thyroid UK list as most Endos are diabetes specialists and don’t like dabbling in T3 and other nuances of thyroid disease.

[DoeStewart in reply to Wired123]

Hi Dk123, I would love to see a private Endo off the Thyroid UK list but there are none on the list in my area otherwise I would have made an appointment before now. As you can see with @ Rocky and @ Hedgeree, we all live Merseyside area and are struggling to find someone.

[Wired123 in reply to DoeStewart]

Some now do virtual consults but it’s really a good idea to travel for at least the first appt. rest can be done virtually. It can be life changing so it’s worth the effort

[DoeStewart in reply to Wired123]

I totally agree it could be life changing and whilst I am willing to travel it seems quite a number of decent endos are down the south of the country. I would have to be doubly sure that I was going to get listened to and questions answered after paying for travel and the cost of a private appointment. I have been doing some research and think there may be a possibility in Cheshire but they don't appear on the list. More digging needed.