8 weeks after diagnosis

Hi all,

I was diagnosed hypo in October and have been taking 50mcg Levothyroxine. The GP told me to stop running for 8 weeks because it was making my thyroid worse.

My test results last week were

T4 16.4 (11-23)

TSH 4.2 (0.27-4.5)

Perox-something 28 (<34)

The person who gave me the results said they were "fine" (not the GP, just a results line you ring)

While I'm feeling much better than I was 2 months ago I still have no energy to even walk the dog, never mind go running.

If this is "fine", does that mean this is how life is going to be from now on or have I just not given it long enough to work? I booked a half marathon to celebrate being 50 and I'm just sitting here getting fatter instead of training and getting thinner 😢

Thanks for any advice you can offer.

[Spareribs]

Hello Nicola,

You GP was wise to suggest you take it easy when starting treatment & until your levels stabilize (I'm presuming your initial results were worse). However your TSH is raised & only just within range suggesting your thyroid is being overworked (still underactive). Most folk find optimum levels around/below 1. T4 is OK but optimally higher in range.

Did you have FT3 tested? as this is the actual usable hormone needed for energy.

TPO - Thyroid peroxidase antibody test - which indicates autoimmune thyroiditis. (yours within range). It is recommended to have full thyroid testing including free T3, to see what is actually going on - perhaps 50mcg is not enough for you yet (it is a starter dose). Unfortunately NHS labs won't usually test FT3 if TSH is within range.

Realistically you're looking at at least 6 months to stabilize, so in order to optimise your medication you need to check & sort any associated low vitamin/ deficiencies e.g. B12/folate, ferritin/iron, Vitamin D. and take any supplements 4 hours away from your Levo which should be taken first (or last) thing with water only.

Hope the suggestions help, & I hope you will be running soon! J

[Hidden in reply to Spareribs]

Thanks for your reply. I didn't get the original results, just the diagnosis. I've been taking multivitamin daily and trying gluten free and something is working because I feel better than I did.

Should i be seeing the GP about increasing the levo dose or do I just keep plodding along on this dose? The results-line didn't suggest any action, just told me the results were fine so I don't know what to do next.

I guess I just want to feel human again whereas at the moment I do too much sitting around feeling sorry for myself.

Thanks

Nicola

[Spareribs in reply to Hidden]

Hi, my surgery put lab tests on-line - along with booking appointments/repeat prescriptions etc. - I think all GP surgeries are supposed to offer this service this year (??)

Going Gluten free can support a decrease in autoimmune response - but in 8 weeks - I don't know.

Just for info multivitamins aren't up to the job & won't combat a deficiency (too common) - sadly GP funding constraints make them reluctant to test B12 & Vit D - they'll probably do an iron panel 'tho. I expect you already know the importance of these......

You don't have to sit there feeling sorry for yourself! I have a brisk walk everyday - well work, babysitting & daylight permitting!

[Hidden in reply to Spareribs]

No suggestion of doing vitamin/mineral testing... Although on a separate note, my daughter was diagnosed with Vitamin D deficiency and was told to just take multivitamins so I assumed NHS funding wouldn't stretch to giving her vitamins.

What would you recommend instead?

[Spareribs in reply to Hidden]

Yes - I was told to source my own vitamins (I used drops but there's more choice now - soft gels/spray etc with K2/Mg)

Vit D testing costs £28 here (NHS lab) - test for a starting point.

cityassays.org.uk/vitamins....

Then supplement according to your levels (unless you've been to Tenerife lately?) I did 5000iu daily winter months - shin/rib pain much worse to start then pain eased (so much so I declined bilateral cubital and carpal tunnel surgery - & I'm not the only one to report this). Now I just supplement if I feel joint pain.

GP should test B12/folate - this can be neurological impairment - best source of info is the PAS site here on HU.

(PS my daughter & grand-daughter were deficient too)

[bluebug in reply to Hidden]

If your daughter is not an older teenager/adult, or is pregnant they would have prescribed her at least 800IU tablets as deficiency in vitamin D3 causes rickets.

With adults it depends on how bad the deficiency is and the area on what they do. With severe deficiency they either give you very high dose vitamin D3 tablets on prescription, or give you a prescription for 800iu tablets then tell you to take something like 5-6 of them daily.

If your deficiency isn't that bad to start with, or once they think you aren't severely deficient anymore they then tell you to buy your own supplements as a maintenance dose.

I'm not sure why your daughter was told to take a multivitamin as the advice given to people including myself is to buy our own vitamin D3 separately from somewhere like Boots or Holland and Barrett. That way we can take the recommended amount as multivitamins tend to only have 200-400iu of vitamin D3 in them which isn't enough to combat deficiency.

Boots and many high street shops actually don't sell vitamin D3 in a higher enough dose without calcium in it. As calcium shouldn't be supplemented unless there is a deficiency in it, you are better going online to buy vitamin D3 in the first incidence and then going around all your local independent pharmacies to see if they sell it separately if desperate.

[Angel_of_the_North in reply to Hidden]

If she actually had a vit D deficiency the GP is REQUIRED to prescribe according to the guidelines for your local area.

[Hidden in reply to Angel_of_the_North]

She was 14 and was suffering with severe depression at the time. We have managed to get her stabilised and able to cope again but I was surprised that she wasn't offered a more precise dose.

[lucylocks in reply to Hidden]

Hi

Has your daughter had her thyroid levels checked as depression can be a symptom of hypothyroidism.

Hypo. can also run in families. How much Vit D is she taking.

As others have mentioned you need an increase in your levo. 25mcg. for six weeks then retest.

[Danielj1]

Hi

Welcome to the ex marathon runners club!

f I can encourage you I would suggest you will get back to running, energy will return, you can get most of your old life back.

8 months in I have just completed a first week of full runnning training - I am fine to run to 45 minutes and not further so only 5k and not HM races for now.

Supplements and a specific diet is key - you have to find your own way over this and what works best for you.

I have posted a lot of detail here and what supplements I needed to add to my 50mcgs thyro - it is working brilliantly for me. I accept from feedback here others are taking different approaches. If I had to rely solely on thyro I would be not within a mile of proper running training.

So I accept it is hard when views differ to have absolute confidence what you are doing is right.

If you need any more detail then let me know.

Good luck!

[Hidden in reply to Danielj1]

Thanks for your reply although I'm a little saddened to hear that the HM is looking extremely unlikely. Not sure what to do about the sponsor money now 😣

[shaws]

Your results are not 'fine' yet. You need an increase of 25mcg levo every six weeks until TSH is 1 or lower.

Levo is slowly built up in 25mcg increments every six weeks until we feel well and TSH is 1 or lower. Many doctors believe (poorly trained) that if the TSH is anywhere in the range (these figures are in brackets after results) that we are on sufficient. No we aren't as the aim is relief of symptoms.

thyroiduk.org.uk/tuk/about_...

Doctor has to test B12, Vit D, iron, ferritin and folate - all have to be optimum not somewhere in the range.

Blood tests have always to be at the very earliest (TSH is highest then and drops throughout the day which may mean the difference of getting dose raised or reduced.

Always get a print-out of the results for your own records and always make sure ranges are stated as members cannot comment unless ranges are shown.

[Hidden in reply to shaws]

Thanks for your advice. I've just had 2 days of total exhaustion and my kids are suffering so I'm going to ring them tomorrow for a discussion about the dosage.

[Tasker]

Welcome to the forum!

I was diagnosed in Sept 2017 and after my second set of blood tests (ie the first set after being on levothyroxine) I too was told by one of the admin team at the surgery that my results were normal. But based on advice from here I asked to speak to a GP and pushed for a dose increase. The GP didn't want to give it to me, as they seem to think that blood results being anywhere in range means they are fine - when we know we are far from well! But she gave in as I was politely persistent... So do try to see a doctor and push for the dose increase.

Like you I have found going gluten free helps. Also, get your vits and mins tested, either by your GP or privately using the deals available via Thyroid UK; based on my results and advice from people like SeasideSusie on this forum I am supplementing iron, D3 with K2, magnesium, vit B, and selenium, and I'm sure that's all helping too. I'd avoid a multivitamin and instead supplement to specific things that you are short of - if you post results on the forum people will advise. I am also now making my own kefir as a probiotic to help my gut health.

I'm still at an early stage on this journey too, and I really sympathise with how you are feeling. I am gearing up for my next round with the GP in the next couple of weeks... and hoping that in the end I will fell something like the normal me again one day! So good luck, and hang on in there!

[Hidden in reply to Tasker]

Thanks for your support. I went to see the GP armed with my list of symptoms but I didn't need it. She said that the TSH needs to be around 1 and as it is still too high she increased my levothyroxine dose. Very happy to be getting help without having to fight for it.

Good luck with your own battle.

[Tasker in reply to Hidden]

So glad to hear that you had a positive outcome with your doctor - it's encouraging to know there are some GPs out there who do understand thyroid problems, so let's hope that knowledge and understanding spreads more widely! Good luck with your eventual return to running.