Giving up doctors: Having got a consultation with... - Thyroid UK

Thyroid UK

120,368 members140,113 posts

Giving up doctors

Mag999 profile image

Having got a consultation with an endocrinologist from the thyroid uk list I was hopeful for answers to my 8 months of severe fatigue, loss of stamina, muscle spasms cramps and pain. Sadly no. Although my Tsh has bumped up and down for years between 3 and 4 and recent tests of t4/3 were in the low end of normal he did not see that as relevant and discharged me. I don’t want to trawl around any more doctors trying to get answers but am left wondering what to do next, I have supplemented vitamin deficiency as I don’t seem to absorb well, changed my diet, push myself to exercise despite the fatigue but nothing changes. Feel like I am going mad, imagining symptoms when doctors persistently say they can find nothing wrong, just vitamin d and b12 deficiencies. Feel very stupid for pushing to try levothyroxine which made me feel so ill. I don’t know if anyone here has experienced similar just feels very lonely when you know something is wrong but everyone tells you you’re fine. I wasn’t depressed at the start of all this but I’m definitely heading that way now.

12 Replies

So have you stopped taking Levo? Surely you needed an increase? Did the Endo not suggest that?

Mag999 profile image
Mag999 in reply to JAmanda

No, discharged me , not a thyroid problem , stopped levothyroxine so gp won’t prescribe now. Maybe it’s not my thyroid but i have no idea what’s going on with me

JAmanda profile image
JAmanda in reply to Mag999

It really sounded like thyroid to me! I'd order a private test pack from a test place like Medichecks - at least for tsh T3 and t4 but if poss get the Advanced Well Woman kit. Wait a few weeks till the Levo is out of your system then post your results here with the ranges for some good advice.

SlowDragon profile image
SlowDragonAdministrator

Starting on too low a dose levothyroxine almost always causes more symptoms

Starting on just 25mcg was too little

healthunlocked.com/thyroidu...

Which brand of levothyroxine did you start on?

Standard starter dose of levothyroxine is 50mcg

And dose should be increased slowly upwards in 25mcg steps as fast as tolerated

Levothyroxine doesn’t top up failing thyroid, it replaces it

Extremely common to feel worse on low dose ....bloods should be retested 6-8 weeks after each dose increase

guidelines on dose levothyroxine by weight

Even if we frequently don’t start on full replacement dose, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or near full replacement dose

NICE guidelines on full replacement dose

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.

Also here

cks.nice.org.uk/topics/hypo...

gp-update.co.uk/Latest-Upda...

Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months. RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.

For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.

For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).

If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.

BMJ also clear on dose required

bmj.com/content/368/bmj.m41

bestpractice.bmj.com/topics...

Essential to maintain optimal vitamin levels too

SlowDragon profile image
SlowDragonAdministrator

It typically takes 9-18 months to get started on levothyroxine and then slowly increase levothyroxine dose upwards until on full replacement dose

Mag999 profile image
Mag999 in reply to SlowDragon

I didn’t realise that it took that long but is a moot point now as endo says it’s not a thyroid problem so gp won’t continue prescribing. I will just optimise my diet and vits and mins I’m done for now, its been 8 months of not much from them so either I get better or worse

SlowDragon profile image
SlowDragonAdministrator in reply to Mag999

healthunlocked.com/thyroidu...

These results suggest likely hypothyroid

Getting all four vitamins optimal is first step

Retest in 2-3 months

Always test as early as possible in morning before eating or drinking anything other than water and soon after B12 injection

Do you have Pernicious Anaemia or “just” low B12

Are you vegetarian or vegan?

Look at getting ultrasound scan of thyroid- £150 privately

20% of Hashimoto's patients never have raised antibodies

healthunlocked.com/thyroidu...

Paul Robson on atrophied thyroid - especially if no TPO antibodies

paulrobinsonthyroid.com/cou...

Mag999 profile image
Mag999 in reply to SlowDragon

I tested negative for pa but trialled oral b12 and went downhill so they have assumed I don’t absorb it for some reason. Had a thyroid scan, just some small nodules, essentially normal. Will get on top of all the vitamins and if I still feel awful in a couple of months will get more tests done. Thanks for your advice.

SlowDragon profile image
SlowDragonAdministrator in reply to Mag999

Small nodules is likely hashimoto’s

Essential to maintain optimal vitamin levels by supplementing

Strictly gluten free diet often helps or is essential

Getting coeliac blood test done BEFORE cutting gluten out

Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels

Low vitamin levels affect Thyroid hormone working

Poor gut function with Hashimoto’s can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first

healthcheckshop.co.uk/store...?

Assuming test is negative you can immediately go on strictly gluten free diet

(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)

Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse

chriskresser.com/the-gluten...

amymyersmd.com/2018/04/3-re...

thyroidpharmacist.com/artic...

drknews.com/changing-your-d...

restartmed.com/hashimotos-g...

Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease

ncbi.nlm.nih.gov/pubmed/296...

The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported

ncbi.nlm.nih.gov/pubmed/300...

The obtained results suggest that the gluten-free diet may bring clinical benefits to women with autoimmune thyroid disease

nuclmed.gr/wp/wp-content/up...

In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned

restartmed.com/hashimotos-g...

Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.

Mag999 profile image
Mag999 in reply to SlowDragon

I tested negative for coeliac disease but I do suspect gut issues with my difficulty in absorbing b12 and also cannot maintain vitamin d levels even in summer. Need to psych myself up to remove gluten, have reduced it but not weaned myself off toast!

SlowDragon profile image
SlowDragonAdministrator in reply to Mag999

Loads of gluten free bread makes excellent toast

Must use separate dedicated gluten free toaster

Separate butter, jam, cutting board etc

Waitrose seeded brown sliced bread is fantastic

Warburtons sour dough pretty good

Gluten free crackers are good for lunch

Mag999 profile image
Mag999 in reply to SlowDragon

Right, I will get on to it!

You may also like...