I'm writing here because I need to vent. I've waited 4 weeks for bloods fine for my thyroid and requested from my GP to do a full panel i trener me to Endo add I have only been seen privately and frankly, paying taxes and working for NHS myself, I think I deserve a follow up plan. I was given a 15 min apt today so not even a full apt with GP. She argued the toss with me all the time. According to her, they don't refer patients to Endo and no specialist follow up is required! Also she won't do antibodies because all hypo is hashimoto's and the treatment is no different! That's obviously not true! My hypo is a result of Subacute Thyroiditis and so far it's not been proven to be autoimmune. hashimoto's is a immunity illness, hypo itself in not autoimmune, is a thyroid function issue and they need different approach. Sadly, I read this after I got home. She had requested some bloods and said if results are normal my symptoms are CFS! To which I answered results within range are not optimal for me! What a nonsense! So I guess I'll take those results to a private Endo again who's not the best anyway. Oh, and apparently the GP had never heard that diet plays crucial role in thyroid function.
GPs have no clue!: I'm writing here because I... - Thyroid UK
GPs have no clue!
Yes
It’s not worth the battle
It why this is by far the busiest forum on Healthunlocked
Highly unlikely to get Ft3 tested …..even if GP requests, lab often refuses
NHS will only test TG antibodies if TPO are positive
Significant minority of Hashimoto’s patients only have high TG antibodies
Get FULL thyroid and vitamin testing done BEFORE endo appointment
Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine
For full Thyroid evaluation you need TSH, FT4 and FT3 tested
Also both TPO and TG thyroid antibodies tested at least once
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high thyroid antibodies
Autoimmune thyroid disease with goitre is Hashimoto’s
Autoimmune thyroid disease without goitre is Ord’s thyroiditis.
Both are autoimmune and generally called Hashimoto’s.
Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease
20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis
In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
On T3 - day before test split T3 as 2 or 3 smaller doses spread through the day with last dose 8-12 hours before test
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
List of private testing options and money off codes
thyroiduk.org/getting-a-dia...
Medichecks Thyroid plus antibodies and vitamins
medichecks.com/products/adv...
Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins
bluehorizonbloodtests.co.uk...
Only do private testing early Monday or Tuesday morning.
Link about thyroid blood tests
thyroiduk.org/getting-a-dia...
Link about Hashimoto’s
thyroiduk.org/hypothyroid-b...
Symptoms of hypothyroidism
thyroiduk.org/wp-content/up...
Tips on how to do DIY finger prick test
healthunlocked.com/thyroidu...
Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee
Just TSH, Ft4 and Ft3 test - £32
monitormyhealth.org.uk/thyr...
10% off code here
thyroiduk.org/getting-a-dia...
Monitor My Health also now offer thyroid and vitamin testing, plus cholesterol and HBA1C for £65
(Doesn’t include thyroid antibodies)
Many thanks for your insightful message as always. I appreciate this. You almost want to print this and put it on GPs desk! It's so frustrating!
I've had my antibodies tested twice, once privately, once on NHS and neither result was raised. So my hypo may well not be due to Hashis but could be the result of a pituitary issue, lack of Iodine in diet, or just bad luck.
Ultimately I guess it doesnt matter as the treatment is the same, but I think its important patients and doctors know if it is autoimmune as having one AI disease makes you liable to get another. Plus as you say going gluten and or dairy free can really help some Hashis sufferers. Its honestly depressing having to deal with this sort of ignorance.
Yes, I have no idea if my thyroid was messed up before the illness 3 years ago. After going on levo I felt much better for a while and suddenly symptoms like contact constipation, greasy skin and hair went away. But I was put on levo even though every study said not to use it for pts with the Quervain's thyroiditis.
This all sounds quite typical of NHS Primary Care Services. As for CFS (Chronic Fatigue Syndrome) it’s the ultimate cop out. Yes. It does exist but it’s a symptom not a condition or a diagnosis. In your case, it’s a symptom of your hypothyroidism.
Can only suggest that you write to Practice Manager to express your concerns about your care. It’s your right to have a second opinion so demand that you are referred to an endocrinologist.
Most endos have a long waiting list and quite frankly know little about thyroid. It may be that you’ll have to find a private Endo. At least that will give you a chance to find one who has experience in dealing with thyroid issues. The last thing you want is a diabetician.
Vent away....it helps!
In addition to SlowDragon's excellent advice....
Re CFS
frontiersin.org/articles/10...
Higher Prevalence of “Low T3 Syndrome” in Patients With Chronic Fatigue Syndrome: A Case–Control Study
Your GP is clueless....but you know that!
First....Full ( private) thyroid test as advised.
Post results, including reference ranges, and members will analyse them and advise.
The collective thyroid knowledge and experience of members on this forum far exceeds that of most medics.
The ignorance beggars belief!
Once you have full lab results you will then have the evidence to build a case for correct medication....
if you can find an open minded/ knowledgeable medic to act on the results!
We are all different with different needs, some medics just don't understand this
Also essential to optimise vit D, vit B12, folate and ferritin to support thyroid function.
Good luck!
Thank you. I have bloods by GP on Tuesday. Obviously I had to request morning test which I was given 7:40am. They don't know that, you have to tell them. At least this time receptionist wasn't arguing about this 🙄I'll see what was put on the list, hopefully my app works again and I'll have results on it but last time it didn't work.
I was diagnosed with CFS last year after apparently other factors were taken to consideration (no that were not!). That jumped on that wagon as soon as I suggested it after doing years of research post very bad case of Mononucleosis in 2012. I've never felt ok since but you don't put on 10kg in 3-4 years from CFS! I'm from skinny people family, no matter what I did, I was always underweight. Now I'm 66.5kg and very proud build 158cm tall. I look like a little barrel now.
Honestly, I'm starting to think that, even though I work in NHS(office based), it's just a business as every! Don't sent patients for years because this costs however give them medication which won't harm them but it'll get the business going.
How much levothyroxine are you currently taking
Do you always get same brand levothyroxine
Guidelines suggest likely daily dose levothyroxine might be 105mcg per day
100mcg 5 days and 112.5mcg 2 days
I'm currently on 75 daily. I tried 100 on one extra day and felt terrible
Which brand is 75mcg
Which brand 100mcg
How long ago since you tried this
You might need to increase very slowly
Eg cut 25mcg into 1/4’s and add 6.5mcg daily
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Go home its just psychological. We are A & E. GPS have no control here we say what goes 
Need to have a bit of a rant!
Please could I have help with my results? 
