Just had a phone call from a GP at my health practise. They had asked for advice from the endocrinologists at the local hospital. This was because my blood test results indicate that my TSH does not rise as my T4 falls and I have hyperthyroid symptoms plus ultrasound scan showing thyroiditis.
Apparently, the endocrinologist will only prescribe for primary hypothyroidism. The GP has suggested that I go private but I'm thinking is this correct? Is this within NICE guidelines? They have said that the GP should continue monitoring over the next year. My T4 is now 9% through the range and my symptoms are pretty bad.
Any advice or thoughts much appreciate it.
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Agitator23
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If the GP agrees that you need treating then why doesn't he start you on levothyroxine? I don't understand the comment about Endo's only prescribe for Primary Hypo's?? So who does treat Secondary's?? Sounds like your GP spoke with a diabetes Endo who doesn't realize the pituitary gland is his department too🙄
Sounds like you are being fobbed off, why should you have to pay to to private? And as for the Endo saying they only treat primary Hypo, that's ridiculous, your GP should then refer you elsewhere. To someone who presumably knows about central hypothyroidism.
I dont know if the Pituitary Foundation would be able to help. Or if any members who have dealt with secondary hypo might know a good Endo.
Here’s link for how to request Thyroid U.K.list of private Doctors emailed to you, but within the email a link to download list of recommended thyroid specialist endocrinologists
Ideally choose an endocrinologist to see privately initially and who also does NHS consultations
At the time I started treating my thyroid my FT4 was 8% through the range (no FT3 was done on that occasion). The following month I had both FT4 and FT3 tested and they were 14% through the range and 11% through the range respectively. My TSH has never reached 6.
I did get a few (3 ?) prescriptions for Levo from my GP but I could see the writing on the wall very quickly and decided I couldn't bear the idea of having to beg and plead with doctors for the rest of my life for more Levo. (I was already making use of thyroid forums at the time, so I knew what to expect long-term.) So I test and treat my own levels of thyroid hormones. Luckily I can just about afford it, although I wish I could afford to test more often than I do.
About a year before I got my first prescription I discovered that I had a problem with my pituitary (it's squashed flat), and I think this has reduced my output of TSH. Like you I discovered that doctors just thought that meant I was healthy despite the low FT4 and FT3. That added to my decision to treat myself. It makes my life far less stressful.
P.S. I've never seen an endocrinologist, either private or NHS, and I seriously hope I never have to.
Thanks for your reply. That's really interesting. I also feel that however low my fT4 goes my TSH will never be high enough to get to NHS prescribing threshold. I understand why people end up going it alone in order to get better. It's a real scandal. The pushback from GPs and consultants is unbelievable. This whole situation needs to be exposed.
wish you well Agitator23. I doubt my GPs had even heard of Central \ Secondary Hypo even though my TSH and T4 had been low for years local hospital lab tests always said normal no further action. 4 nhs Endos over the years were only interested in my Osteoporosis. Had no money to go private then but recently at wits end with GPs and no life I asked for private referral to Endo who ran a clinic one day a week at which he didn't deal with diabetes. Thought he was worth investigating. Put me back on levo which GP wouldn't and checking all other female hormones inc Testosterone.
A possibility is I have Isolated TSH Deficiency. Follow up in 3 months to see whats happening.
What I noticed with him was he was making notes and joining the dots. He did a brilliant letter to GP and they are now prescribing Levo. I had more help on this forum about my test results than any of my GPs were able to give me or were interested in.
Hi Sallybones. Thank you for your reply. We sound like we've had similar experiences. Could you message me with the name of your private endocrinologist, please.
I really feel bad for you at only 9 percent. Mine is around 25 percent and I feel really bad with not digesting properly. How can they not address secondary hypothyroidism properly when risk of coma is the same if not taken care of. I have to keep fighting for levo and it's not right.
We all know that NHS endos can be poor, sadly, They mostly specialise in diabetes. But if an endo says he doesn't know anything about central hypo that's a massive indictment of his training. Ask to be referred to someone else.
I would write to my Health Board and ask who they would recommend for possible Central Hypo. Tell them you have been refused at the Endo dept. It is not acceptable to just tell you you cannot be seen, and I have a feeling questions will be asked at Board level.
Hi Serenfach. I'm coming to the conclusion that I'm going to have to take this further. Thank you for your advice on contacting the Health Board. I don't really know the system in order to do this but I think it's something that needs to be done.
Look at your local hospital web site. That should have the details of the Health Board and the main members. Head for the top. I sometimes think that GPs and health staff do not expect to be questioned and can come out with some rubbish just to get us out of the door. One Endo refused to see me as I was "sub clinical". I had been diagnosed 15 years earlier and had been on a range of T4 and T3 during that time. Another said I was underdosed on 300 T4 and wanted me to go up to 350!
I would ask your GP to "trial" you on Levo, as you have read how bad for the heart it is to have low T3. Print this off and take it with you:-
Feeling really down now. Just received an e-letter saying my endocrinologist appointment in November has been cancelled 😥 No explanation. Is this related to what happened yesterday? Feel totally abandoned by the NHS. A really difficult day for me.
To be honest it would quite likely have been disappointing and another 8 months wasted, I'd speak to your GP about a trial of Levothyroxine to get the ball rolling 🤗
Thank you for your reply. My GP won't prescribe, sadly. I'm going to have to go private. The feeling I have to today is of rejection. With all the information they have they've just decided to cut me loose. And this was based on yesterday's interaction with a GP at my practice, who, ironically, was trying to get my appointment brought forward.
My GP will refer. I just wanted to know their earliest appointments. Some have no bookings till July even privately. It will still be private if my GP refers, though. Someone on here said the endocrinologist should also have an NHS practice so I can, hopefully, switch later. A little unsure about that.
I'm not sure the GPs I speak with at the practice understand. I had a frank discussion with one yesterday and she said she couldn't prescribe - because TSH was ok *sigh* So, yes, letting this happen. I don't know where I'd be without this group.
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