frustrated

[66olives]

Back in January I had blood tests done by medichecks. It has taken this long to get an appointment to discuss the results - these being the most pertinent:

Vit D 47.5 nmol/L (range 50-200)

TSH 2.5 mU/L (range 0.27 - 4.2)

Free T3 3.43 pmol/L (range 3.1 -6.8)

Free Thyroxine 13.8 pmol/L (12 -22)

Today I asked for the increase only to be told my results were good. That I didn't need an increase because they were smack in the middle of the 0,27-4.2 mU/L. However, after trying to push HTR on me, he has given me a TSH blood test form. He will then consider raising my levothyroxine. He also told me the T3 and T4 levels are basically irrelevant as they are not allowed to test them. They have no bearing on how I feel.

Yes I did quote the NICE recommendations and Prof Toft, but to no avail.

I refused the offer of HRT as when I was given it 6 years ago I reacted to it in a rather dangerous manner. I explained it caused I would describe as reactive depression. From no where I had thoughts of things such as If I don't brake behind this oil tanker. That's it, it's all over. Yes he asked for a second time if I needed HRT. I have not had a period in 10 years and have only experienced a very localised menopause symptom.

I also expressed that I am worried about my cholesterol (I appear to have a fatty spot on my upper eyelid) . He said they could test my cholesterol ... but the blood test ordered is only for TSH.

I feel like the local GP practice are trying to kill me.

Apparently my Vit D level is fine, is just because of where I live. How can it be fine if it was dropping whilst taking supplements.

I am beyond angry with the whole situation. This is the first conversation I have had with a (trainee) GP about my hypothyroidism since the day I was diagnosed, 10 months ago. Everything has been done via text messages. When I rescinded the permission for texts and emails, via letters.

Apart from going for the test, what else can I do? I want to feel well.

[SlowDragon Ambassador]

Vitamin D you can self supplement to improve

NHS will usually only prescribe to bring level to 50nmol

How much vitamin D are you currently taking

Common to need higher dose vitamin D with thyroid disease

Make sure you test thyroid as early as possible in morning, ideally before 9am, only drink water before…..and last dose levothyroxine 24 hours before test

How much levothyroxine are you currently taking?

GP is poorly informed on how to treat (no surprises there)

If they still refuse to increase dose levothyroxine after test…..You will need to see thyroid specialist endocrinologist

Email Thyroid U.K. for list of recommended thyroid specialist endocrinologist and doctors

[e-mail]

On levothyroxine TSH should always be under 2

Most people when adequately treated on just levothyroxine will have Ft4 in top third of range and Ft3 at least halfway through range minimum

[66olives in reply to SlowDragon]

Thanks Slow Dragon. I now use the Better you D3 & K2 and the Vit B12 oral sprays and but not taken my Health Span B complex as I was certain the GP would demand another test. I don't want to change my regime until I do another Medichecks test in the spring.

I have booked myself into a walk in clinic for my cholesterol too. I am very worried about the levels.

I did quote everything you have said in the past. NICE, starting dose, Prof Toft. He was not interested in learning any of it.

Can I ask another question? For the past 6 yrs it has felt like I have a lump in my throat. Should this be assessed? Or is it normal to feel like that if you have hypothyroidism? And yes I did tell the GP today (third doctor I have mentioned it to.)

[SlowDragon Ambassador in reply to 66olives]

High cholesterol levels will reduce as dose levothyroxine is increased

nhs.uk/conditions/statins/c...

If you have an underactive thyroid (hypothyroidism), treatment may be delayed until this problem is treated. This is because having an underactive thyroid can lead to an increased cholesterol level, and treating hypothyroidism may cause your cholesterol level to decrease, without the need for statins. Statins are also more likely to cause muscle damage in people with an underactive thyroid.

Lump in throat …..similarly will diminish as dose levothyroxine is increased (or especially if T3 is added)

GP’s frequently ignore the “lump in throat” and dismiss it as anxiety…..globulus hystericus

racgp.org.au/afp/2013/octob...

bjgp.org/content/65/639/554

[SlowDragon Ambassador]

Previous post

healthunlocked.com/thyroidu...

Suggest you double vitamin D and retest in 2-3 months

Are you now taking a daily good quality vitamin B complex that contains folate (not folic acid)

You can also use these

guidelines on dose levothyroxine by weight to push for next 25mcg dose increase in levothyroxine

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

[greygoose]

I have booked myself into a walk in clinic for my cholesterol too. I am very worried about the levels.

Please, please don't push this cholesterol thing. With your low T3 your cholesterol is almost certain to be high, and your doctor will want you to take statins. When all you need is an increase in dose to raise your FT3.

Cholesterol isn't going to do you any harm whatever it's level. Most of your body is made of cholesterol, and so are your sex hormones. Lower your cholesterol too far and your whole body will be affected. Doctors know nothing about it. They get their information from drug company reps who want to sell statins. But statinds can do more harm than the cholesterol, which doesn't cause heart attacks or strokes, no matter what your doctor believes. So, my advice would be to let sleeping dogs lie and concentrate on getting higher levels of FT3.

[66olives in reply to greygoose]

Thanks, I want the info for myself, i want a complete picture of what i need to do to get myself healthy. Im pretty certain its high, but without thst figure its easy to hide behind ignorance instead of keeping to healthy options. I have heard too much about statins side affects to want to take them

Sometimes knowledge is power.

[greygoose in reply to 66olives]

But cholesterol isn't making you unhealthy. It's totally irrelevant. And, it has nothing to do with your diet - healthy options or not. And cholesterol levels have absolutely nothing to do with fat intake - fat isn't unhealthy, anyway. The body needs fat.

Cholesterol is made in the liver. The most you consume in your food, the less it makes. The less you consume, the more it makes. The liver tries its best to keep levels stable, but low T3 means that the body cannot process cholesterol correctly, so it tends to build up in the blood. So, what you need is more T3, not a change of diet.

[66olives in reply to greygoose]

Thanks for that explanation. It helps to know that. And it explains a few things to me.

[greygoose in reply to 66olives]

You're welcome.

[tattybogle]

Hi 66olives. this post and the linked article written for GP's by specialist Registrars in Cardiology and Endocrinology might interest you.On the table of hpyo/hyper thyroid effects ,it clearly states raised cholesterol is a sign of low thyroid hormone levels and that it will resolve when they are treated .

They consequently advise GP's to treat all patients on Levo to keep TSH between 1.5 - 2

healthunlocked.com/thyroidu.... (gps-told-keep-tsh-0.5-2pmol-l-hypothyroidism-causes-raised-cholesterol-thyroid-disease-effects-on-heart-and-cardiovascular-system).

[66olives in reply to tattybogle]

Thanks I will haveca read.

[Roadrunnergreg]

Let's talk levels, ideal levels... TSH ideally 1 or below.

FT4 ideally about 65-75% of the range or 17-18

FT3 75-80% of the range ie about 6.0-6.2

Vitamin D 70-80 there's enough to make cathelicidins ie critter killers bacteria, viruses, fungus.

120-150 there's enough for the full known benefits which includes several cancers...

Vitamin D is magnesium dependent for absorption also body size say if your trim you may need 4000-6000iu to get and stay at 100+ if your obese you may need 3x that amount to get and stay there

[66olives in reply to Roadrunnergreg]

Thanks RoadrunnerGreg, I have learned about TSH, T3 and T4 levels ... but getting a GP to accept this as best practice is proving a challenge. Interesting facts about D levels and why they're crucial. I will look that up. And yes I do take a magnesium supplement.

[Roadrunnergreg in reply to 66olives]

Here's a good presentation on vitamin D, you might want to get a drink first lol

youtu.be/NuWC2d0mTbo(Not working as expected?)