Update and latest results

[Gardeningaddict]

Hello again lovely people. I thought I’d come back and update having been on Levo 50mcg since diagnosis 3 months ago.

In early January the GP asked me to retest and only TSH was done (big let down but not unexpected)! I was amazed that after only 2 months on Levo 50mcg that my TSH had dropped to 0.44 (0.35-4.94) from 10.1 My resting heart rate had initially slightly improved but since the beginning of January, it has been slowing down to where it was before treatment. I sat patiently waiting for the results of the Holter monitor and after numerous phone calls and being passed from one person to another, I finally heard from cardiology 5 weeks later, that the test had, in fact, failed. Goodness knows how much longer I would have had to wait to be informed of this fact, if I hadn’t made a general nuisance of myself! Anyway, I was asked to have a different monitor fitted at the hospital which was last week, so hoping the results come back quickly.

In the meantime, having no idea of my FT3/4’s and becoming more tired and symptomatic, I thought I’d get some private bloods done. My TSH has started climbing again and after an initial improvement in FT4, it has now fallen back below range and FT3 has dropped too.

Therefore, my interpretation is that I should now move up to 75mcg? So wish me luck with that!

It’s so bad that we have to take control of our condition and pay for blood tests. This is the first condition that I’ve had to use the NHS for virtually 20yrs and am feeling very short-changed.

I have been taking Vitamin D since diagnosis and recently moved onto Better you D3 +K2 spray. Also bought Better you B12 spray and Ingenous B Complex but haven’t started everything at once.

I’m thinking I will hold off on the B12 in case the GP doesn’t trust the MMH blood results and insists I do them again! I hope they don’t delay an increase in Levo pending the monitor results because I am convinced that the bradicardia is a direct result of Low thyroid hormones.

Sorry about the rambling post and would appreciate it if anyone has any nuggets of wisdom to impart?

Thanks in advance for the continued support I get from reading posts and learning from you all.

[SlowDragon Administrator]

Yes clearly in desperate need of next dose increase in Levo

Which brand of levothyroxine is your 50mcg

[Gardeningaddict in reply to SlowDragon]

Thank SlowDragon. I’m taking Mercury Pharma 2 x 25mcg

[SlowDragon Administrator in reply to Gardeningaddict]

So either take 3 x 25mcg

Or get 50mcg and 25mcg tablets

[SovietSong]

Defo increase to 75mcg.Considering both T3 and T4 need to be roughly at 70-75% those numbers are miles off.50mcg is only a starter dose and the longer you stay on it the more symptoms will appear.Your body is crying out for more levo.8 weeks on next dose then retest and increase another 25mcg.Most people eventually end up needing around 100-150 daily.

[Gardeningaddict in reply to SovietSong]

Thanks SovietSong. I agree but we all know what a battle it can be. I will be polite but firm at my next appointment 🤣

[SlowDragon Administrator]

very helpful profile 😁👍

Can’t see that you have had iron or ferritin levels tested yet

Have you had coeliac blood test yet?

If not that needs doing BEFORE considering trial on strictly gluten free diet

nice.org.uk/guidance/ng20/c...

1.1 Recognition of coeliac disease

1.1.1 Offer serological testing for coeliac disease to:

people with any of the following:

persistent unexplained abdominal or gastrointestinal symptoms

faltering growth

prolonged fatigue

unexpected weight loss

severe or persistent mouth ulcers

unexplained iron, vitamin B12 or folate deficiency

type 1 diabetes, at diagnosis

autoimmune thyroid disease, at diagnosis

irritable bowel syndrome (in adults)

first‑degree relatives of people with coeliac disease.

[Gardeningaddict in reply to SlowDragon]

Not yet had ferritin or coeliac tested 🤦‍♀️ I will ask at next appointment. I always forget things when I get in front of them! Thanks for the reminder. I may write prompts so I don’t forget things. Most of the time, the average GP asks questions whilst staring at theircomputer screen and not even looking at the patient in front of them. Not one of the three I have seen have ever touched my neck. I’m sure I can see swelling at the thyroid site. Is it usual to have a scan? Should I be asking for one?

[SlowDragon Administrator in reply to Gardeningaddict]

write a short list of points/questions before consultation/phone call

I’m sure I can see swelling at the thyroid site. Is it usual to have a scan? Should I be asking for one?

Yes ….Request ultrasound scan

[Gardeningaddict in reply to SlowDragon]

I’ll add it to the list of requests. Thanks again x

[Foxxyyh in reply to SlowDragon]

I agree, although im on that waiting list until November. You can see that my swelling is getting larger. I can see it, my friends can see it, yet the doctors always say they can't see it. Only one doctor 'felt it's and that the one referring me to the endocrinologist.

[SlowDragon Administrator in reply to Foxxyyh]

you could get scan privately

thyroiduk.org/get-support/t...

[Foxxyyh in reply to SlowDragon]

I am in no position to further afford anything else. I just about get by enough to pay my bills and not as I'm not working at the moment because I'm always unwell I can't fund it.

[redhead41]

You also need magnesium with the vit d and vit K. Also folate with sublingual b12

[Gardeningaddict in reply to redhead41]

Thanks Redhead. I have folate in the B complex and I’ve got some magnesium lotion (transdermal). Who knew? Certainly not me. I’m learning so much 🤯

[redhead41 in reply to Gardeningaddict]

I don't think transdermal magnesium will be enough as mag is needed as a cofactor for but d to work/ be absorbed. There is a brilliant group called the Nutrients Team who have a protocol with this information.

[Divine1990]

Monitor My Health blood tests are carried out by an NHS laboratory. Having explained this to my GP she now accepts the results. When I say accepts actually still can't quite get past TSH but I will keep banging away! At least information included in my records now.

[BlueKeith]

You need another increase and probably a couple more as time goes on. Got to be a bit forward with the NHS GP as they can be reluctant to do so. Last visit I had my gp was reluctant to increase from 100 to 125 until I explained how thorough I was at taking it early morning away from any food drink and how I'm doing everything I can to improve my condition diet vits etc. Hope you get sorted out. Keep us posted.

[Eddie83]

Yes, 50mcg is a pretty low dose. You can estimate your levo "full replacement dose" by multiplying your weight in kg, by 1.7mcg/kg body weight.