TSH Result Endo Appointment

[Molly139]

Following on from yesterday’s result TSH 12! I’ve just had the endo telephone appointment and oh my word I have no words to describe it, it was like talking to a politician who never gives straight answers. Did you know results of ‘adequate’ is the same as ‘optimal’ 😂

I totally get your comments on some endocrinologists not budging from the TSH. I’ll be having another GP blood review in November and I will also be getting a private full test for thyroid, antibodies and vitamins etc

After that nightmare all of you should be so proud of the knowledge you give on this site. I for one am so grateful.

Here’s the outcome any comments would be great, thank you:

She has increased me to 100mcg from 75mcg I did increase to 87.5mcg this morning what would you advise?

My vitamin D has gone up to 79 from 43 she said I should drop to 600 and was puzzled when I told her I would stick to my dose of 2000 and 200 K2-MK7 (she asked me to repeat the K2 vitamin I got the impression she would have been happy to suggest Vit D only).

Being referred to a sleep study

Blood test for stress hormone for generalised tiredness

[SeasideSusie Remembering]

Molly139

She has increased me to 100mcg from 75mcg I did increase to 87.5mcg this morning what would you advise?

You can increase in 12.5mcg steps if you prefer, just make sure you test 6-8 weeks after each increase.

My vitamin D has gone up to 79 from 43 she said I should drop to 600 and was puzzled when I told her I would stick to my dose of 2000 and 200 K2-MK7 (she asked me to repeat the K2 vitamin I got the impression she would have been happy to suggest Vit D only).

They have no training in vitamins, etc. The Vit D Council recommends a level of 125nmol/L and the Vit D Society recommends a level of 100-150nmol/L so I would be guided by that.

Certainly don't reduce your D3 dose from your current 2,000iu at the moment. You need to reach the recommended level then find your maintenance dose (by trial and error) to keep it there. My maintenance dose is 5,000iu daily, other people may be fine with 1,000iu as a maintenance dose. Retest twice a year once you've reached the recommended level.

You don't need 200mcg K2=MK7, 90-100mcg is enough for up to 10,000iu D3. K2 isn't a cheap supplement so why pay for more than you need?

[humanbean]

With a TSH of 12 you are clearly very under-medicated. In your shoes I would go up to 100mcg rather than 87.5mcg. You will probably need further increases in dose before you start to feel better.

Your vitamin D could still go up a bit more. Optimal is either 125 nmol/L or 100 - 150 nmol/L depending on source.

Your endo is like doctors everywhere - knows nothing about nutrition. 600 iU of vitamin D wouldn't raise levels or even maintain levels for many people. I know from experience that my own vitamin D level drops if I supplement less than 2000 iU, but obviously the amount people need for maintaining or increasing levels varies from person to person.

[tattybogle]

Rubbish isn't it , i'd like to know how much NHS are paying Endo's for each 'thyroid' consultation. I bet it is more than 'adequate' !

They rarely give any better advice about doses than you can get from the collective wisdom on here, often you have to come back here to 'correct ' their instructions , they know naff all about nutrition, and to top it off they often leave people feeling so upset they have to come here for 'feel better ' therapy.

What 's the point of them ? (apart from prescription s for T3, which they try their hardest not to do)

I suppose there must be some good ones .....but I wish NHS would stop paying Endocrinologists for thyroid consultations if they can't be bothered to learn enough about the subject to be of any help.

They could use the money to train 'thyroidologists' and prescribe trials of T3 /ndt to those who might improve on it.

But that would be too sensible , and we can't be having that , can we ?

Is the 'Stress Hormone Test' a cortisol test to look for Addisons / Cushing's ?

Presumably sleep study is to look for sleep apnea to explain tiredness.

[Molly139 in reply to tattybogle]

I never thought I’d have to question the NHS, but it’s as though we are just TSH numbers and how dare we question this with our quality of life. Thank you for your post it helps to know other people feel the same. I thought the same regarding the hormone stress and sleep tests

[tattybogle in reply to Molly139]

Was this your NHS endo appointment ? or private. I thought you would have had to wait much longer for NHS appt, maybe they are not so busy as i thought.

Did he even discuss T3 results with you, or not even acknowledge it as relevant ?

I think i can guess the answer

I've got similar results to you, ie over range fT4 giving TSH o.o5, with FT3 around mid range or a bit below. and iv'e been on Levo 20 yrs.

I can't decide whether to bother asking GP to refer to Endo. But will probably have to since i can't really afford private consult.

What did you say to GP to get referral ? i 've been expecting to be told 'you don't need a referral to Endo , you are just taking too much Levo, reduce dose and go away'. I did reduce dose like he asked , but it left me constipated so he's very reluctantly let me put it back up 'at my own risk'.

I wish i'd thought about getting T3 earlier since it looks like the route to get it via private prescription from Europe will disappear with brexit

I was looking at your other posts and it's interesting that GP notes originally said 'hypo , not hyper as originally thought. Ignore over range FT4 as not helpful' , Makes me think that you must have had a 'Hyper' phase previously on your results. I think it's unusual for them to write 'ignore high FT4 as unhelpful' . My GP freaks out about over range FT4, but have let me 'get away with under range TSH for yrs.

Sorry this is a load of waffle, i'v e just had a cup of coffee so i'm buzzing .

I hope you feel OK on 100. I'm interested to see what happens to your TSH next

[Molly139]

Hi, sorry to hear you’re feeling the same too it’s awful 😩

The journey for me started after I had another ‘attack’ palpitations, anxiety, nearly passing out and went to A&E. As before all results were ‘normal’ and felt like I was labelled yet again with hey we have an anxious annie here 😄 I decided to have private bloods tested and used a company called Thriva. I was overmedicated, had high antibodies and low vitamin D. I requested 5 years of medical records from my GP and there was definitely a pattern to the symptoms all pointing towards over medication. I took this and the private results (best £79 I’ve spent) back to my GP and he referred me to a NHS endo. I too thought I would have a longer wait so I priced up a private consultation. £200 for initial telephone call, too expensive for me.

I did ask the endocrinologist about my poor conversion and should I be tested for T4 and T3 and she said it wasn’t necessary at this stage TSH is only required. At that point I gave up.