My story and a question re meds.: Hi Everyone... - Thyroid UK

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My story and a question re meds.

Bambalam profile image
9 Replies

Hi Everyone,

I thought I would share my story and there is a small question at the end :-)

I was diagnosed hypothyroid last year by my GP, who is one of the rare ones that treat the symptoms not the numbers. I had been ill or at least 4 years and undergone lots of tests, including invasive tests for MS. Last year I got a new G P as my old one left and on my first consultation he asked if I had a thyroid problem as I was a walking advert.

At the time of diagnosis I had all the horrible symptoms, the worst for me was the crippling pain in joints especially my feet. By Xmas, I was on 50mcg levo, Vit D supplements, and a gluten free diet. M GP has been great. Armed with info from this site, he has listened to me and acted. I'm on Vit D as he tested me when I asked and knew there was a link between thyroid and Vit d.

I have since gone down hill. I started full time work again at the end of Jan. ended up with diviculitis and had begun to feel thyroidy. One drs appt later, bt test done. TSH has gone from 0.18 on Dec 11 to TSH 2.0 yesterday!!!! No wonder I feel like poo.

So my question is as follows:-

GP has advised raising to 75mg every other day - I reckon I should be every day. I'm sure I read here about the study re moving TSH down and the double dose thing. I.e. takes the same dose increase to reduce from 2.0 to 1.0 as it did to get from 5.0 to 2.0. Is this right in your opinion;-)

The increase in my TSH has coincided with a change of packaging on my levo ( almus box went to gold from silver) has anyone else had any problems?.

I will also mention that when my G P started treating me by TSH was only 2.8. He gave me a trial first then diagnosed when my symptoms improved on meds- told you he was great :-) !!

Although I don't comment much, just wanted to say thank you to everyone here as just reading the blogs and questions helps.

Sam x

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Bambalam
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9 Replies

I will leave others to answer your question about almus as I'm not familiar with it, but just wanted to tell you how good it is to hear from someone who has a GP like yours. He sounds like a treasure - never let him go! Jane x

Bambalam profile image
Bambalam in reply to

He is fantastic Jane, and I've told him he can't leave!

Hi Bambalam, I was stuck on 75mcg for a year and got a lot worse. I think this amount is probably not enough for you. Is you FT4 low?

Got to say I'm more than a little jealous you have a listening doctor who is so receptive to your needs!

As for the brand of levo, I'm not familiar with it so can't comment. X

RedApple profile image
RedAppleAdministrator

Almus is not a manufacturer of levothyroxine. Almus is simply the 'packaging' name used on 'generic' medications dispensed by Boots. If you look inside the box, you should find a PIL (patient information leaflet) with the manufacturer details on it. Most usually, the levothyroxine inside the Almus boxes carries the manufacturer name of Actavis. It may also be written on the actual blister pack too.

Informaton on all UK thyroid medications, with full ingredients lists, can be found on our main website here:

thyroiduk.org.uk/tuk/treatm...

I think the only reason for the change in the Almus packaging colour was to make it easier to identify the different tablet doses.

Bambalam profile image
Bambalam

I have checked the brand, it's a long way from the kitchen to the computer- brain fog and all that :-)

It is Almus on the box, but actavis on the leaflet.

Bambalam profile image
Bambalam

Thanks red apple, your post reminded me I should have checked there- doh! ;-)

RedApple profile image
RedAppleAdministrator in reply toBambalam

No problem :)

As your GP is so good, I'd be inclined to go with his idea of alternating doses for now. Whenever the dose is changed, you should be retested about six weeks later. At which time, you'll be able to assess the impact of the increase both in terms of symptoms and test result, and decide if the next increment is needed.

Don't forget that time of day affects thyroid test results, so make sure your blood is always drawn around the same time of day for most accurate comparison. (Early morning is best).

Chippysue profile image
Chippysue

Great Doctor, agreed ...... however -

Have you ever had your thyroid antibodies tested? you will then know whether it is autoimmune hypothyroidism.

Also what is your Free T4 because just treating you by your TSH is not the answer. Do find out what your local lab range is for free t4 and find out what yours was as I would think that they tested it???? Ideally you would have your free t3 tested too but labs only do this when an Endocrinologist has requested it.

75mcg is just a starting dose, I would doubt very much whether this will be the ideal dose for you. There are some Endocrinologists who say that they cannot see how anyone would be on less than 125mcgs (don't know where I read this now).

Also how is your B12? hope it is above 500 :-)

Which vitamin D supplement are you taking?

My Free T4 is above the lab range, I feel well and would not be willing to lower dose to get my free t4 lower because hypo symptoms would return.

Hope this helps -)

Heloise profile image
Heloise

When I began on Synthroid, my doctor told me to increase my dose each week. It's been so long, I can't remember exactly but I think it was by 25 mcg. and to continue until I felt good. He checked me in a month. I have read that your own thyroid gland produces 325 mcg. when you are healthy. I think I felt balanced at around 100 or 125. I do not understand why the UK tries to limit you. Unless you have heart issues, etc. I agree with Suze that almost everyone needs more than 50 mcg. sometimes a lot more.

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