NHS endocrinologists in Edinburgh + advice

Hi all.

I have recently moved to Edinburgh from London and I am here to ask for advice.

I am new to this forum and I wonder how come I have not discovered it before!

I had a complete thyroidectomy in 2009 because of thyroid cancer and since then I have been struggling to find doctors who even listened to me.

Initially I was followed by private doctors, as my employer at that time provided medical insurance. They were not any better than NHS ones.

The oncologist kept me for 9 months on T3 even if I kept complaining that I had palpitations, extreme mood shifts (like manic depression), very frequent periods, very fast metabolism. She got offended when I asked for an endocrinologist to see me and wrote a letter to the surgeon saying that she would not see me again (!).

Then I changed jobs and no longer had medical insurance and I have been seeing NHS doctors since. Basically I have a blood test for calcium and thyroid hormones every 6 months.

I have been struggling with the values of calcium, sometimes too much and sometimes too little. Both give nasty symptoms so I usually know when I need to be tested for calcium values again.

Also the other values they check are of course TSH and T4 and even though they seem to be fine, I have been feeling increasingly worse, especially in this last year.

The symptoms may not all be related, but I have been experiencing irregular periods, hair loss and brittle hair, nausea vomit and diarrhea, general tiredness and lack of strength, sleepiness.

If any of you can give some advice in how to find a decent consultant in Edinburgh I would be really grateful.

Has any of you been seen by Dr. Mark Strachan, Dr Nicola Zammit or Dr Alan Patrick?

Or do you know any other ones who you would recommend?

Last but not least, can I ask the GP to refer me to a specific consultant?

Lots of questions, I know!

Please answer via private message.

Thanks!

[Clutter]

Welcome to the forum, FrancescaM.

Email [e-mail] for a list of member recommended endocrinologists.

In England patients can request referral to out of area specialists. I'm not sure that applies to Scotland and Wales.

Were parathyroid hormones lost or damaged during thyroidectomy?

If you post your recent thyroid results and ranges, and any results and ranges for calcium, PTH, vitamin D, ferritin, B12 and folate members will advise whether you are optimally medicated and whether supplementing vits/minerals would be helpful.

[Hidden in reply to Clutter]

Thank you Clutter.

I did email Louise and I have a list of doctors. However I have been advised to ask here for personal recommendations. I guess some things cannot be officially disclosed

I don't know if I am unlucky but most of the times, the doctors did not give me the blood test results. I am not sure why this happens but it is quite frustrating. However I managed to have these info from blood test taken just before moving to Scotland:

*13/05/2016*

TSH < 0.01

FT4 23.4

Ca adj 1.82

P 1.26 [no idea what this is]

PTH < 0.7

From previous documents:

*03/05/2016*

TSH 0.04

T4 23.3

*19/08/2015 (almost a year ago)*

TSH 0.03

T4 22.9

As far as I remember, I have been on the same amount of thyroxine (1.25) for several years so no action was taken. Are the values acceptable?

Also, I don't think PTH has ever been tested before - or is there another way to call it?

After the operation the surgeon did not tell me clearly if I still have parathyroid glands or not. He just said that he tried to save some of them, but I am not sure what that meant. However, after the operation I immediately had strong cramps and had to be on calcium IV for a few days.

Personally I doubt I will be ever able to do without vitamin D supplements. I'm currently on Alphacalcidol 1microgram twice a day (it used to be 3 times a day but the calcium level became too high, they put me on one a day but it immediately dropped too low, now I am on 2 capsules a day and hope to be tested soon).

Any feedback welcome!

[Clutter in reply to Hidden]

FrancescaM,

If you ask for your test results they have to give them to you. Data Protection Act entitles patients to their results but you have to ask for them. Ask for the lab ref ranges too as they differ from area to area and it is quite likely your London and Edinburgh ranges will be quite different.

TSH 0.01 is very suppressed. FT4 23.4 is either top of range or slightly over. 125mcg may be slightly over replaced but unless you feel hyper there's no need to reduce dose.

There are 4 parathyroid glands. Even if 1 remained it should function adequately without supplementing calcium and vitD. It sounds like most were lost and if any remained they were damaged. If parathyroid glands are going to recover they normally do so within 4 months of thyroidectomy. I think you'll have to supplement calcium and vitamin for the rest of your life.

nhs.uk/Conditions/hypoparat...

I can't tell without ranges whether Calcium or PTH (Parathyroid Hormone) are within range. I suspect Calcium is deficient and dose needs adjusting.

P 1.26 may be the level of phosphorous in your blood. PTH regulates calcium and phosphorous levels.

[Hidden in reply to Clutter]

Thank you for all the info, very appreciated.

Yes I had no doubt I would be on vitamin D supplements for life. What frustrates me though is that I don't seem to find a good dose of supplements to take. I have often been hypo-PTH (bone density scan also showed calcium deficiency) but in a few occasions the value of calcium in my blood became too high and the symptoms were quite nasty

I guess I will have to get used to this constant adjustment of calcium levels - does this happen to other people as well?

Somehow calcium level seems to need more adjusting than thyroxine levels (touching wood).

Thanks again!

Francesca

[Clutter in reply to Hidden]

FrancescaM,

It can be a constant struggle to balance calcium in particular.