TSH result has surprised me! Does it seem a big... - Thyroid UK

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TSH result has surprised me! Does it seem a big rise for the small change in Levo ?

19 Replies

I collected a print out of latest TSH test this morning.It was 3.4 mu/L( 0.35 - 5.5 )

I am taking 100/75 on alternate days ( Mercury Pharma )

In August 2013 it was 0.13 ( 0.35 - 5.5 ). I was on 100 mcgs MP.

It seems a big rise for having my Levo reduced by only 12.5 mcgs.

Almost back to where I came on here which was 4.08 ( April 2013 )

I will get Ft/3andFT4 done next week at hospital where my Endo's clinic is...hoping this might help solve things ......fed up with relying on TSH readings.

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19 Replies
Heloise profile image
Heloise

When your doctor saw this rather significant jump in your TSH, did he not insist you go back to your original dose? In this case it seems your TSH test was a good indicator and I would run with it. If your free t3 and t4 come out NORMAL they may insist on keeping you on the lower dose. Of course, if you feel well and have no symptoms....no problem. I would be careful how you proceed.

in reply to Heloise

How I wish I was feeling well Heloise.I'm one of the many who are not happy on M P Levo.....muscle aches, breathlessness and itchy skin.

I am seeing my Endo early next month who ordered the FT3and FT4 tests( having those next Weds.) Hadn't had my TSH done since last Aug.so asked my GP for a form to get it done at the local community Hosp.He wanted to add it to my form my Endo gave me for the FT3....I had to say "No....Please don't as I've waited a long time( 3mths.) to get that test which my Endo thinks is important,so don't want to risk it not being done because they only do the TSH "Fortunately he could see my point.

It was my Endo who adjusted my Levo last November so thought I'd see what difference it had made to my reading.I will have to leave everything until my appointment with him now.My GP won't change my brand of Levo until after that.I am very suspicious of the fillers in the MP as I took myself off it for a few days and was noticing the difference. However,must check first whether I'm converting the T4 to T3...it's all taking such a long time....thank goodness for this site which has enabled me to keep abreast of other people's experiences and make notes of anything that might be useful for me too.I didn't see my doctor this morning, just the receptionist,who bless her could only report to me that my TSH was NORMAL!!!!!!!!!!

Heloise profile image
Heloise in reply to

Oh Marfit, my feeling after twenty years is that if a type of hormone doesn't suit you, you can still have good blood test results but have those other feelings. Even in the U.S. I had to fight my doctor and locate one who would prescribe Armour. Since you have the same problem within the NHS, I guess the next best thing is to find out whether you are converting well. I still feel those may be toxicity symptoms but that's purely guess work. Have you perused the Stop the Thyroid Madness website? stopthethyroidmadness.com/t...

in reply to Heloise

Yes I actually have the book....must do a bit of revision.

I have since been reading Mary Shoman's Thyroid Diet ...revised edition.I found a lot of useful information there.

But I started to struggle at the mention of supplements etc that I don't recognise...I'm not very adventurous.

nightingale-56 profile image
nightingale-56

Hi Marfit, I am having all your same symptoms on MP Levo at 75mcg per day, which has not changed in the past 19 years. Since last summer my TSH has been rising and now at 2.34 when it has been just over 1.00 for years and my blood pressure is all over the place (on the high side) when before it was about 120 over 80 approx. Not looking forward to trying Wockhardt but it is my last hope on NHS as Actavis caused bad stomach pains. Janet.

in reply to nightingale-56

Levothyroxin seems to be causing a lot of us problems doesn't it?

My blood pressure started rising,however, I have a monitor and take my own at home.( white coat syndrome)Just deliver results to GP when I go into surgery.He's happy with that.

I recently did some experimenting with various foods ....took myself off potatoes,tomatoes peppers, bread,pastry cake,biscuits.( most of the time....I very occasionally can't resist a slice of seeded bread toast. )

The most amazing thing is my blood pressure came down to125/77, didn't make any difference to my weight and hasn't helped the muscle problems

So don't know if looking at foods might help you.I have never used Wockhardt...would be interested to know how you get on.How many different dosages do they do ?

If I can't get sorted I can see me buying it myself,hoping to find the right ones for me. Good Luck and I hope Wockhardt works out for you.X

Hello Martin. Just to say I was exactly the same

On only 62.5 mcg per day TSH 0.001 T4 over range and T3 over range. 3 months on and a change to 50mcg a day my Tsh gone up to 4.9 T3 and T4 lower but in range,but slight return of symptoms so am now on 62.5 mcg on day and 50 the next and will have blood test in a while to see what readings are then.Like you a big change in bloods for such a small decrease in meds. Hope we can get it sorted out!

Oops. Also meant to say IQ am on MPQ levo also like j-bee my BP has risen quite a lot also.

I wonder how many take less meds in the summer?

in reply to

You've just made me giggle spareribs......when do you suggest we start?

Sorry about that....,you just tickled my sense of humour.A giggle is good x

Yes that has been said on here hasn't it? Do hope I can sort a few things before Summer arrives.

in reply to

Oh good! 'twas unintentional 'tho, start anytime! but any excuse for a giggle! :D

My fault for not saying what I meant, oops! - you know when you do a quick reply, just in from work with cuppa in hand & inbetween sorting out washing/cooking/poorly cat etc...

I suppose I've just been around too long and noticed, come Autumn-time, A LOT of folk suddenly need more medication, although the TSH last result was v low making the doc lower the dose - double whammy - less hormone to help through the cold months. :(

Maybe I'm imagining it.... but we DO feel better in the summer, right? (for one it's warmer! - well usually). So... if T-hormone creates energy we need less when warm more when cold - quite a bit goes to produces heat.

I have no memory of research for this.... save one thing - my TSH came down when supplementing Vit D (over 5 to 1.69) - and this was the ONLY thing that was different as I was untreated with any other meds/vits - just an observation......... J :D

in reply to

The seasonal aspect is an interesting one,being serious.

This is where the Vit.D comes in doesn't it?

I know when I was tested and was low,my GP said to get out into the sun as much as possible( no wonder we're low on D in UK) and to supplement with vitamin tablets in Winter.

I do hope your cat is OK.X

shaws profile image
shawsAdministrator

This is an article by Dr Lowe and synthroid is the USA equivalent of levothyroxine.

web.archive.org/web/2012012...

in reply to shaws

A good article shaws.You always come up with useful information that I can either relate to or take notes from when you are replying to others.

I'm sure you've seen plenty of my posts .....many repetitive,but seemingly there are many of us all having these same muscular symptoms. I keep coming back to medication being the source of the problem.It's the only thing that makes any sense to me, because although I kept going back to my GP over a span of ten or eleven years saying that I didn't feel right when I was on 50mcgs and as the GPs do he kept telling me there was nothing wrong with my thyroid,I was at least walking reasonably well.

It is since going on MP last Summer that my weight went up with each increase and the muscular pain got worse to the point that I hardly walk anywhere now ....park my car as close as I can to the shops I'm going to.

It's just so not me.The only exercise I can do is my water workout because my weight is supported by the water.

Still,I'm trying to be patient ....not long until I see my Endo again after FT3/4 tests.Thanks as ever for your support.X

shaws profile image
shawsAdministrator in reply to

I can empathize very well with the muscular pain. The stiffness I had when first on levo plus pain were awful. The worst was in a nice hotel and when I tried to get out of the bath, my arms couldn't take my weight and knees couldn't bend I would have been in there forever if my husband wasn't there. He had to drag me out - I had visions of the hotel staff having to help. It was definitely due to the levo.

Here is another from Dr L.

web.archive.org/web/2010073...

in reply to shaws

I don't even want to visualise the scene Hee Hee !!

I know what you mean though shaws and I hope it doesn't get that bad as I would miss my soak in the bath.I'm always uncomfortable when away too as I lean on the left hand side of my bath which is wide enough to support my arm(put a wet flannel over it to stop my arm slipping)

If a hotel bath is round the wrong way I've had it! A shower at night is not the same.......oh the joys of ageing with a thyroid problem.....good job we can laugh. Am now going to look at your other link....thanks Shaws X

PS I hope you are able to enjoy a bath now with the right medication.

shaws profile image
shawsAdministrator in reply to

I couldn't believe that you could feel so unwell, worse than before diagnosis and on medication, and you just don't realise it is the meds initially. Thank God for the internet.

in reply to shaws

Yes...and HU TUK...thanks for all your input this evening and I will report back again after seeing my Endo ....10 Feb.

Clutter profile image
Clutter

Marfit,

You can request your pharmacist supplies Actavis instead of MP. I did so in Dec. There is no cost implication as it is also generic. I think it's a tad less toxic than MP, possibly the different fillers. Now my dosage is reduced I'm supplied 50mcg Actavis and 25mcg Wockhardt.

in reply to Clutter

Yes...I have asked ,however my GP won't do anything until I've seen my Endo in Feb after my FT3/4 tests,which may change things anyway.......just having to put up with the stiffness for another couple of weeks.I've had Actavis before and am sure I wasn't as bad as this.Haven't had Wockhardt though so don't know how that would be.

I'm just going to have to wait to see if I need T3.

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