Hypothyroid and can't get gp appointment for another couple of weeks.

[Love2camp]

I just need to vent. My blood results have been back since 9th May and my TSH is over 9. I feel awful and exhausted, my face is a puffy mess,gaining weight and aching all over. I can't get a gp appointment until 31st May as the gp just marked my results as needs appointment to discuss within 4wks! Is this normal now? Is hypothyroidism not classed as being ill now? I'm just really angry and upset.

[SlowDragon Administrator]

Looking at previous post

You’re on 100mcg levothyroxine at moment?

Which brand

Do you always get same brand levothyroxine at each prescription

Suggest you consider cutting a 100mcg tablet into 1/4’s to get 25mcg

Add a 1/4 tablet every other day …..so that’s an average increase of 12.5mcg per day

When you see GP tell them that you have done this

Retest thyroid levels in 6-8 weeks

Have you ever had thyroid antibodies tested for autoimmune thyroid disease?

If not request antibodies are tested

Request GP test vitamin D, folate, ferritin and B12 too

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

What vitamin supplements are you currently taking?

Autoimmune thyroid disease

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 (Hashimoto’s or Ord’s thyroiditis)

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 and last dose levothyroxine 24 hours before test 

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

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...

If you can get GP to test vitamins then cheapest option for just TSH, FT4 and FT3 and includes BOTH TPO and TG antibodies -£29 

randoxhealth.com/at-home/Th...

Monitor My Health also now offer thyroid and vitamin testing, plus cholesterol and HBA1C for £65 

(Doesn’t include thyroid antibodies) 

monitormyhealth.org.uk/full...

10% off code here 

thyroiduk.org/getting-a-dia...

NHS easy postal kit vitamin D test £31 via

vitamindtest.org.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...

[Love2camp in reply to SlowDragon]

Thank you for the advice SlowDragon. I don't know why I didn't think to start chopping up my 100's but I'm hoping to start doing that today. My vitamins were last checked in November. They were..

B12 ...731 range 223-1132

Vit D...76 range 50-125

Folate...20 range 3.9-20

Ferritin...192 range 14-186

I take a daily multivitamin from Tesco with no iron as I can't tolerate it.

Evening primrose 1000mg

vitamin c 200mg

Cranberry extract from Tesco.

Due to rheumatoid arthritis I'm also on Tofacitinib which is an immune suppressant.

I don't know if my thyroid antibodies have ever been done. I just assumed with having an autoimmune problem anyway I'd have Hashi. Is it important to know this? Could the reason for the hypothyroidism change how it's treated?

I've never really got involved in my thyroid treatment. I think getting diagnosed at 20 I just lived with it but tbh I've had a lifelong struggle with my weight even though I eat a really good diet.

[tattybogle]

Hi lovetocamp sorry no one seems to have heard your rant yet,,,

totally sucks.... i agree , and you can bet they'd be quicker than that if they wanted you to reduce your dose .. you'd probably get an immediate text saying "lower your dose to x "

Do you really need to wait for the appointment to increase dose ? , since that is obviously what they will be going to tell you to do anyway with TSH 9,

if 125mcg was giving you low TSH levels , and 100mcg is clearly not enough ,, then why not take 112.5mcg until the appointment and tell GP that's what what you've done when you get to the appointment .....that's what i'd do .

have you got any 25's left ? or have you just got 100's.

If you've got 25's then take 100 /125 on alternate days to get 112.5mcg (or cut in half to take 112.5mcg everyday if you prefer)

If you've only got 100's , then cut one in half to get 2 x 50mcg's and take those spaced apart over the week eg. 100 mon /100tue /150 wed /100 thurs/ 100 fri/ 150 sat/ 100 sun

That gives 114 mcg/day .

[Love2camp in reply to tattybogle]

Thanks Tattybogle, you're so right about the instant texts lol. I'm going to start splitting my 100's today and take a 1/4 every other day. I imagine I need the full 125 as my dose becoming too high coincided with a large weightloss. Unfortunately that's back on since spending the past 6 months exhausted and unable to exercise. I'll see what gp says when I finally see him. It won't help that I'm so angry at being made to wait so long for an appointment and I don't trust him now knowing how he thinks that's acceptable.

Thanks for your advice. I'm now reading everything I can to learn about thyroid problems. I'll go to my appointment armed with the evidence I need on paper too.

[tattybogle in reply to Love2camp]

112.5mcg might be enough ~ and more to the point , it might avoid constantly yo -yo ing between 125 and 100..... in case 125 gives you TSH level that causes GP to reduce again straight away.

Stability is good , if you can get it...