Why Won't GP Refer to Endocrinology?: Can someone... - Thyroid UK

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Why Won't GP Refer to Endocrinology?

Newbie_1965
Newbie_1965

Can someone help with my readings please?

March 2018 TSH 4.25 mU/L Free T4 12.6 pmol/L;

April 2019 TSH 6.19 mU/L Free T4 11.3 pmol/L Thyr Perox ABs 10.5 U/mL. At this point a GP put me on thyroid medication.

Aug 2019 TSH 1.13nU/L Free T4 14.8 pmol/L (thyr perox abs not checked). The levothyroxine caused headaches ++ so another GP took me off medication.

Dec 2019 TSH 8.40 mU/L T4 11.9 pmol/L Thyr perox abs 32.4 U/mL

Parathyroid hormone Aug 2019 - 7.7 pmol/L, Dec 2019 - 9.9 pmol/L. Vitamin D less than 20nmol/L

esr steadily rising also but they say rheumatoid factor was negative. It was at 31mm/hr Dec 2019

I've a tiny brain aneurysm. My thyroid ultrasound (March 2019) said - ''normal in size but mildly hypoechoic course parencyma. Correlation with thyroid function tests advised''. This check was done via ent; I had been referred there for tinnitus and neck lumps. Tinnitus and neck lumps still problematic. I was discharged from ent after one visit.

So my gp wrote to endocrinology for 'advice'. The endocrinologist said - not to be on levothyroxine, don't check vit d until a year has passed since last check (Aug 2019), and not to check the parathyroid levels again EVER, as they fluctuate and the readings are of 'no use'.

Should I push for a referral? Although getting a bit fed up with having to fight to get checks done so may have to go private. I'm absolutely exhausted. Once I'm back from work, all I can do is feed the pets, make a quick meal for the family, shower and I'm asleep by 10pm.

Any advice would be helpful as I'm seeing a different gp next week.

19 Replies
oldestnewest

It will help those better able to advise if you edit the post to put the ranges in which are shown in brackets as labs ranges differ

SlowDragon
SlowDragonAdministrator

April 2019 TSH 6.19 mU/L Free T4 11.3 pmol/L Thyr Perox ABs 10.5 U/mL. At this point a GP put me on thyroid medication.

How much levothyroxine?

Aug 2019 TSH 1.13nU/L Free T4 14.8 pmol/L (thyr perox abs not checked). The levothyroxine caused headaches ++ so another GP took me off medication.

Headaches are common hypothyroid symptom.... has you had a dose increase in levothyroxine since April?

In April, how much levothyroxine were you started on?

Bloods should be retested after 6-8 weeks and dose INCREASED by 25mcg .

This blood test followed by dose increase repeats until all symptoms are gone

Levothyroxine doesn’t “top up“ your thyroid output, it replaces it

Being left on too low a dose makes you more hypothyroid

Modern thinking actually recommends starting on full replacement dose of levothyroxine....for this very reason

Extremely common to be started on too low a dise, not increased fast enough or left languishing on minute dose

NICE guidelines

nice.org.uk/guidance/ng145/...

1.3.6

Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.

BMJ clear on dose required

bmj.com/content/368/bmj.m41

Post re full starting dose

healthunlocked.com/thyroidu....

Many GP’s simply don’t understand this concept nor have read newer guidelines

SlowDragon
SlowDragonAdministrator

Vitamin D at 20nmol is severely deficient

GP should be prescribing LOADING Dose vitamin D

Has this happen?

300,000iu over 6-8 weeks

ouh.nhs.uk/osteoporosis/use...

GP will only prescribe to bring levels to 50nmol.

But improving to around 80nmol or 100nmol may be better

ncbi.nlm.nih.gov/pubmed/218...

vitamindsociety.org/pdf/Vit...

Once you Improve level, very likely you will need on going maintenance dose to keep it there.

Test twice yearly via vitamindtest.org.uk

Vitamin D mouth spray by Better You is very effective as it avoids poor gut function. There’s a version made that also contains vitamin K2 Mk7

It’s trial and error what dose we need, with hashimoto’s we frequently need higher dose than average

Government recommends everyone supplement October to April

gov.uk/government/news/phe-...

Also read up on importance of magnesium and vitamin K2 Mk7 supplements when taking vitamins

betterbones.com/bone-nutrit...

medicalnewstoday.com/articl...

livescience.com/61866-magne...

sciencedaily.com/releases/2...

Bone pain

easy-immune-health.com/pain...

naturalnews.com/038286_magn...

Vitamin K2 mk7

betterbones.com/bone-nutrit...

healthline.com/nutrition/vi...

If vitamin D is low, B vitamins may be too. As explained by Dr Gominack

drgominak.com/sleep/vitamin...

healthunlocked.com/thyroidu...

Getting B12, folate and ferritin tested

Put your request in writing saying the letter is to go on your medical records. I always found that helped my Dr focus and do referal just to cover his behind. If he refuses get it in writing also to go on your record in case you need to refer back/take it further. Referals come off your gps budget so they are often not keen, i would cc the eno by name as well. No point a refreal to that eno ask for a recomendation in your area. I never had a written request refused, even all the tests I wanted done. I put that ' after my thyroidectomy my health had such a dramatic decline and I didn't believe HRT, antidepressants and opioid pain killers were helping.'

Keep it short (one side of A4 page) and factual ending with 'I am sure like me you want to get a definitive diagnosis so I can get better. I would appreciate a written response within 14 days' most treatment is a fight these days. I did go private for first consultation with a good endo and he put me on his NHS list, it was £175 well spent for me, it may be worth considering.

Thanks for replies. Norms are TSH mU/L (0.35 - 5.00); Free T4 pmol/L (9.0 -21.0); Thyroid Perox.ABs U/mL (less than 6.0); Parathyroid Hormone pmol/L (1.6 - 7.5); Vit D should be above 25 nmol/L; ESR mm/hr (0-19).

I was put on 25mg levothyroxine for approx. 2 months. The headaches got me scared so after discussions (with GP only), they said to stop. I'm on colecalciferol 800IU (equivelent to 20 micrograms vit D3).

The Vit D however is raising my 'bad' cholesterol, which is worrying when thinking about the brain lesion.

Marz
Marz in reply to Newbie_1965

Have not heard of VitD raising LDL - your D dose is too small to be effective.

It is often said here that vitamins and minerals need to be optimal for Thyroid hormones to work well and not to have results bumping along the bottom of the range. So B12 is good around 500 - Folate and Ferritin mid-range and VitD around 100.

When Iron is low then that too can cause headaches. Oxygen is transported around the body - including the brain - in the blood by attaching to iron in the red blood cells. Low iron = Low oxygen.

So optomising vitamins and minerals is something we can do for ourselves to make things better.

VitD is more than a vitamin and wrongly named - it is a steroidal anti- inflammatory pro-hormone needed in all the cells for health.

There is no such animal as bad cholesterol (high triglycerides are the problem) - you need cholesterol to make hormones and low T3 causes cholesterol to rise as it not utilized properly and your vitamin D is so low that it will make you more susceptible to illness, including coronavirus, and the dose is just enough to keep a good level constant in a healthy person in winter - so useless for raising level and not in accordance with NHS guidelines for dosing. Your levo dose was too small to be of any use - your free T4 was very low still - so you became more hypo. Headaches are a symptoms of low iron, high iron, low magnesium, low B12 and folate, hypothyroidism and low vit D. Your GP was wrong to take you off levo (doesn't sound very clued up), you should have had an increase. You are now very hypo. Being hypo increases risk of dementia and heart disease. Can you see another GP with more of a clue?

Levothyroxine will cause headaches, or seem to, as your system adjusts and accommodates. Your bloods do sign the need for thyroid hormone supplementation. But what is your free t3 level throughout? If you don’t have free t3 levels do thyroid function tests again - tsh ft4 and ft3. Do the tests the same time of day each time and away from any thyroid replacement. Try to resist the headaches stopping you taking levothyroxine, delay will only postpone the time will have to take it (or t3) and your condition is unlikely to get better without adequate thyroid hormone replacement, especially if you have auto immune thyroiditis. That said there may be a need for caution in dosing the thyroid replacement if you also have cardio vascular issues. Your GP should be managing all this and considering your complete presentation. As others have said, write and ask for specialty referral. If there’s no concern about atrial fib etc then why not persevere with small and gradually increasing levothyroxine keeping a close eye on the full TFT as you go, you can also monitor trend in resting pulse rate. If ft3 is still low when ft4 gets mid range then you may need a very small t3 supplement. I say all this from my own experience as a patient, nothing more.

Such a low vit D level can make you very fatigued. As advised above it should be taken with vit K2/m7. Stabilising vitamin levels may help stabilise the thyroid values, but you need advice from an informed Endocrinologist not one that says wait a year to retest vit D. Ask for a 2nd opinion not to the one the GP asked. I believe the Thyroid UK charity can supply a list of Consultants who specialise in this subject. Unfortunately I had to go private to bypass my local hospital where the endocrinologists professed to be experts but weren't.

I believe having too low Thyroxine levels raises cholesterol levels. It sounds as if your GPs are trying to do a good job. There has recently been an article in Pulse magazine for doctors that offers good advice from an Endocrinologist with 40 yrs experience in this area. You may be able to get a copy from thyroid uk. Keep calm, good advice above from slowdragon.

vocalEK
vocalEK in reply to Retteacher

It's true. Having too low thyroid hormones, specifically Free T3, is a factor in elevated cholesterol tests. Once my doctor added some T3, my total cholesterol went from 230 down to 192.

"Can an underactive thyroid cause high cholesterol?

Thyroid hormones, especially T3, play an essential role in helping the liver process and remove any excess cholesterol from the body.

According to research, up to 13 percent of people with high blood cholesterol also have an underactive thyroid.

The same research notes that societies, such as the American Association of Clinical Endocrinologists and the American Thyroid Association, recommend that people newly-diagnosed with high cholesterol get tested for an underactive thyroid.

The research also suggests that a person’s cholesterol levels may improve once they have received treatment for an underactive thyroid, even if they do not require cholesterol-lowering medications." medicalnewstoday.com/articl...

I'm probably going to have to go private but want to make sure I get the right one. Has anyone had any experience with Dr B.M based in Glasgow Scotland?

Edited by Admin: Any information about individual doctors must be by private message only, no discussion on the forum.

I’m not sure they can refuse a referral. My gp is lovely. And pretty much does as I ask. I’d double check as it’s your health. If change gos or get a second opinion. And fight for it.

SeasideSusie
SeasideSusieAdministrator in reply to EbonyEvans

Ebony

I requested a referral to a lung consultant when I was very unwell with my lung disease after 3 months on an additional inhaler prescribed by my GP (never had seen a consultant up to that point). The additional inhaler hadn't helped, in fact I was far worse after the 3 months. GP refused and gave me a gym referral for 32 sessions instead (which I had to pay for, it wasn't on prescription). Gym sessions did nothing for me, as I expected.

Wow. I must be lucky. I’d report that. I don’t understand why another person can play with out health like that. I’ll have a look into the guidelines. These CCG’s may be to blame. What are we paying our taxes for????

SeasideSusie
SeasideSusieAdministrator in reply to EbonyEvans

A few months after that debacle, I was very unwell again with my lungs, saw a different GP who sent me for an x-ray (this GP had a special interest in lungs). The x-ray showed pneumonia and pleurisy. I told him I'd never seen a lung consultant, he immediately dictated a referral. However, referral time was many, many months so eventually I paid to see one privately. I chose one who had been recommended by someone else with lung disease.

Consultant immediately prescribed an antibiotic as he recognised what was wrong from my description but said to ask GP to prescribe rather than pay the price of it privately. He transferred me back to NHS (he doesn't see many private patients) and arranged a CT scan on the NHS which came through in a matter of weeks which diagnosed another lung condition as well as the original one.

Consultant knew from our conversation that I'd had my request for a referral refused.

As you can imagine, my opinion of the first GP who gave me the gym referral went down the toilet. She's also TSH obsessed and refuses to discuss or acknowledge that FT4 and FT3 are important! The second GP was rude and obnoxious but knew about lungs but he's retired now.

I’m all for reporting people who don’t know or want to do their job. Mainly because it can affect others. And as I keep saying this is peoples lives. It seems all the old school caring gps are retiring.

Pneumonia and Pleurisy would have made me she her or at least had an investigation opened. Life threatening illnesses missed because she didn’t want to send you for a test you’d requested. That makes me so mad. I think it’s 18 weeks max referral time now - nhs wording. I guess it sounds better than 6 months. I’m all for recommendations. I also research if I need a certain type of specialist. I’m lucky enough to be well enough to travel to other parts of the country if need be.

I have a new for and they sent me for every rest going. Did you have a lung function test?

SeasideSusie
SeasideSusieAdministrator in reply to EbonyEvans

I'm in Wales, they do things differently here. Unfortunately also I'm with the worst performing Health Board in Wales that has been in special measures for a few years with apparently no improvement.

My son was referred by his dentist for two wisdom teeth to be removed under GA. That was a year ago. He has an appointment this month to see the consultant, not for their extraction but just to see if the consultant agrees with the dentist, if so he will then go on the waiting list for extraction.

It wasn't that the original GP wouldn't send me for a test, she just wouldn't do a referral to a consultant. This was about 3 years ago.

Did you have a lung function test?

Yes, that was done back in 2013 - full lung function test with lots of different types of equipment at hospital. Also had a stress echo test on the same day to determine if it was lungs or heart that was causing the severe breathlessness. This was instigated by a really caring GP who retired not long after.

I have no words for this level of madness. I hope it gets reviewed as a whole but usually not until someone famous campaigns or brings it to the forefront. Thank you for all you do for this site. With all that going on I have a new level of respect for you. Ebony

Just back from the 'other gp'. In her words - 'your t4 is within normal limits so you don't need thyroid meds'. Regarding the possible hyperparathyroid issue, I've bilateral basal ganglia calcification (picked up on CT scan) but they say they won't be checking my pararthyroid levels. Something's happened with the parathyroid for me to have the basal ganglia calcification.

Mentioned the referral to endocrinology, to which she said - they (endocrinologists) won't accept your referral.

She also gave the impression that she thinks my fatigue is psychological related. I'm a strong woman who was a lone parent. Didn't get a penny or finger of help from anyone. Still worked while I juggled a home/kids/pets etc.

I've neck lumps appearing on both sides but that's seemingly normal also as it's only the 'gigantic' ones that are sinister.

So trying to work out who to pay privately - endocrinology or someone to look at my neck lumps. Can't do both.

I'm a blooming nhs worker with 33 years service.

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