Slightly frustrating GP appointment. Recent NHS bloods showed TSH only just within the lab range (4.24) but higher than a few years ago, T4 at 11.9 but within range. I sent my Medichecks results through beforehand showing a TSH of 6.1 and antibodies >200. She didn't exactly dismiss them but queried where I got the test from and essentially said she couldn't do anything based on that, and NHS results had been 'normal'. Not prepared to diagnose Hashimoto's from it. I went over the symptoms again, emphasising the fatigue and low heart rate, and she just tried to think of anything else it could possibly be caused by other than thyroid, because if within range, everything must be fine.
Offered a repeat NHS thyroid test, with the TPO antibodies, and *if* elevated TSH again, she could refer on to Endo, but had no idea how long that would take. Basically only looks at the lab ranges and goes with the NICE guidelines. Found it odd that she would only refer out, and not just start treating with Levo if TSH came back raised again.
I agreed to the new blood test and managed to get an appointment before 9, so TSH should be similarly high as private results. But it seems as though trying to get treatment this way is just going to be hitting brick walls all the time. Plan is to go back after new test, ask if she'd be OK with me going private and if I could get Levo through her if recommended. She's nice enough and wanting to help, but said she couldn't even add Vit D to the new test because there wasn't a clinical indication for it (I live in Scotland...will never understand why it's not routine). Also said my Ferritin was low-ish but fine and in range (it was 25!!).
Any suggestions for links/papers I could maybe pass on to gently nudge her in the right direction without seeming like the 'wrong' kind of patient? I don't think I'll get anywhere but would like to try and keep her on side and in the loop. She did try to look up links between EDS and thyroid (chance would be a fine thing), so seems somewhat open to it.
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seveneleven
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it's not so much a case of getting her onside ...whether she's on side or not, there are limitations to what she can do as an NHS GP .
NHS GP cant offer levo unless they have 2 consecutive NHS results showing over range TSH + symptoms (results should be 3 months apart according to the NHS guidelines , sometimes this gap is shortened to 6 -8 weeks, but there does need to be a gap , to rule out a 'one off' high TSH from some transient cause)
A private diagnosis / request to prescribe levo would not override this. NHS GP can't prescribe Levo on NHS based soley on private diagnosis/ request .. they would still have to have blood results that confirmed the need for it . 1 raised TSH result won't do, they still need 2 ... and they can't accept private fingerprick test for official diagnosis purposes.
Some NHS labs have policy limiting repeat TSH tests , eg. some won't repeat TSH test within 3 months if the previous one was within range. Also some labs have a policy where they won't test fT4 unless TSH is over range. GP request usually does not override these policies.
She's ordered TPOab which is good , but even when TPOab are significantly over range , they can't prescribe levo until they also have the over range TSH 's
The exception to this is Central/Secondary hypothyroidism (where TSH doesn't rise appropriately in response to low fT4 levels) .. but diagnosing Central / Secondary Hypo is endo territory , not GP.
What was the reference range for the 11.9 fT4 test ?
Thanks, that's clarified a bit. Reference range for T4 was 9-21. On private test it came back as 17.4 though, so seems to be fluctuating and dumping hormone because of autoimmune attack. I think I will just need to go private, because waiting another 3 months after this test to maybe or maybe not get a 2nd test out of range, and with symptoms getting worse all the time...I've just had enough of it really.
In the majority of patients 50-100 μg thyroxine can be used as the starting dose. Alterations in dose are achieved by using 25-50 μg increments and adequacy of the new dose can be confirmed by repeat measurement of TSH after 2-3 months.
The majority of patients will be clinically euthyroid with a ‘normal’ TSH and having thyroxine replacement in the range 75-150 μg/day (1.6ug/Kg on average).
The recommended approach is to titrate thyroxine therapy against the TSH concentration whilst assessing clinical well-being. The target is a serum TSH within the reference range.
……The primary target of thyroxine replacement therapy is to make the patient feel well and to achieve a serum TSH that is within the reference range. The corresponding FT4 will be within or slightly above its reference range.
The minimum period to achieve stable concentrations after a change in dose of thyroxine is two months and thyroid function tests should not normally be requested before this period has elapsed.
Ferritin most recent was 25 (15-200), folate 3.6 (3.1-20), B12 340 (200-883). Am on heme iron, methyl b complex and extra methylfolate now. Have just done a new Medichecks test with full panel and vitamin D, so will get results soon. Never had D tested on NHS. GP said she couldn't add it to this upcoming test without clinical signs like muscle aches etc.
Is GP allowed to refer for ultrasound with raised antibodies (if on an NHS test), or does the same rule of two above-range TSH tests apply/can it only be done via an Endo referral? If done privately is that through any private doctor or specifically an endo? Thanks very much - all the info is really helpful.
it was clearly explained to me by my private only endocrinologist that a TSH above 2.5 is where you’ll start to feel hypothyroidism symptoms. He also explained that the NHS set their ranges too wide. Like you I was back and forth to my GP. I had lots of hypothyroidism symptoms but was not helped at all. They even refused blood tests. Eventually they did agree to blood tests after 5 visits over a year. My TSH was 36! No apology. No endo referral either. I was put on levothyroxine 100mcg a day. I still didn’t do very well on levo mono therapy. Anyways long story. I went private only and finally was diagnosed. Given t3 plus t4 meds. 10 years of suffering could have been avoided if I’d gone private only in the first place. Honestly GP’s know very little about the thyroid and how to managed it. NHS Endo’s aren’t that clued up either in my experiences. My GP actually said to me on 2 occasions that I may as well be talking to a plumber, he knew that little.
Good grief...."may as well be talking to a plumber"...not exactly the reassuring response you want from a doctor! Yes it seems to be that you either get lucky with a GP who is a bit clued up and willing to be flexible, or you don't. Going to do the repeat NHS bloods and explain I'm going to see a private doctor rather than wait for a maybe referral to endo, but ask if she would agree to review after a few months if private treatment is clearly helping (will collect temp and heart rate, etc. as evidence as well as bloods), and potentially take over Levo prescription at some stage, but won't hold my breath.
Well I , too, live in Scotland. Seems that when they do the TSH they go by the guidelines that the hospital lays down. I tried saying that it really should be how the patient feels - not everyone fits the guidelines. I was put on 100mcg and now on 75 mcg because another test came back saying I was getting too much. As a retired nurse - and working with an endocrinologist at the time of being diagnosed a number of years ago - he told me that once you are diagnosed with hypothyroidism it has actually been starting to fail a number of years before. This was true in my case as I suffered the symptoms earlier than my diagnosis. He also said you cannot always go by the blood test but should go with how the patient feels. Putting this to the GP got me nowhere!! The hospital said ..........and that was it!!! Sorry this may not help you and if you do go private hope you get somewhere with what they say.
It's all just such a palaver sometimes by the sounds of it. I'm almost certain my thyroid has been struggling for a good 10 years (first got ill, and everything was tested except thyroid!). There seem to be disadvantages either way. Go private and pay for it, or go totally via NHS and have to worry about GP not increasing doses properly, or having to change GP and new one deciding you shouldn't be on meds, or not being able to access T3 if needed down the line. Just want to feel a bit more human again!
I feel for you as I have moved house a couple of times and each time the Drs have a different opinion. However I do have to say that they all seemed to go by the guidance of the hospital's opinion which annoys me tremendously. After all it is the patient that matters and how they feel should come into it
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