Checking my levels before I see my GP tomorrow - Thyroid UK

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Checking my levels before I see my GP tomorrow

Tillytums profile image
8 Replies

Hi, I am new to this group. I was diagnosed 2 years ago with Under active Thyroid, even though I had all the symptoms, my GP kept refusing to test saying it was my Fibromyalgia. Eventually he did and it came back that I had an Under Active Thyroid!!! He put me on 25mg a day and to be honest my energy levels have gone down and down ever since. But he refuses to up my Levothyroxine. Since December I have been really bad and spent a lot of time sleeping, I have come off some meds which they are not happy about - Gabapentin because I hated the side effects and they are now ignoring everything I tell them. I have never felt so tired, I either sleep for England or don't sleep at all. I am itching like crazy, my eyebrows have almost disappeared, I have no interest in Food but don't seem to loose any weight and generally feel awful. I have never been so depressed. I finally got them to do my bloods on Monday and have to see the GP tomorrow. I have just rang and got my results to see what you think. They are :

TSH 2.28.

T4 11.0

T3 4.0

Any advice would be greatly received please, I need to feel normal again xx

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Tillytums
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8 Replies
SeasideSusie profile image
SeasideSusieRemembering

Tillytums You have a GP who doesn't know how to treat hypothyroidism I'm afraid.

You say you were diagnosed 2 years ago, have you been taking just 25mcg Levo in all that time?

It's normal for thyroid tests to be repeated 6-8 weeks after starting Levo, a dose increase of 25mcg, another test 6-8 weeks later, another 25mcg increase, etc., until symptoms disappear.

Have a look at ThyroidUK's main website > Getting a Diagnosis and Starting Treatment:

Scroll down to "If you are diagnosed" and "Hypothyroidism"

thyroiduk.org.uk/tuk/diagno...

It would be helpful if you could give us the reference ranges for your test results, but we can see TSH is too high and your free Ts are probably low in range.

Also from Thyroid UK's website > About the Thyroid > Hypothyroidism > Treatment Options:

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

"Levothyroxine (T4): The main treatment for hypothyroidism. Treatment is usually started at either 25mcg or 50mcg per day, depending on the severity of the condition. Testing is carried out at various intervals and dosages increased over the next few months until the test results show within normal range. According to the BMA's booklet, "Understanding Thyroid Disorders", many people do not feel well unless their levels are at the bottom of the TSH range or below and at the top of the FT4 range or a little above."

That booklet is available from Amazon for £4.95 and well worth buying so you can show your GP. It is written by Dr Toft, past president of The British Thyroid Association and leading endocrinologist, and I can't see how a GP can argue with a book published by The British Medical Association.

Also - Dr Toft states in Pulse Magazine,

"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance.

But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

You can obtain a copy of the article by emailing louise.roberts@thyroiduk.org.uk , print it off and highlight question 6 to show your GP.

When having thyroid tests done, always book the first appointment of the morning, fast overnight (you can have water) and leave off Levo for 24 hours. This gives the highest possible TSH which is what is needed when looking for an increase in dose or to avoid a reducion. Also, it gives continuity of conditions so that accurate comparisons can be made in the future where results and symptoms are concerned.

Tillytums profile image
Tillytums in reply toSeasideSusie

Thank you. I had my test at 1.40pm and took my Levo as normal and had breakfast and some coke to try and keep me awake as the GP had always said I didn't have to stop anything which always seemed strange to me. I only got those results from phoning the surgery and receptionist came back with no your results are all "Normal" but I insisted that she gave me those figures over the phone so I could check on here with you. I will put my print out on here tomorrow when I get back from GP. I am hoping they increase my Levo as I feel awful and have no life, but not holding out any hope. I am going to buy the book and print this off and email and get that to take with me tomorrow, will let you know what happens. Thank you again x

shaws profile image
shawsAdministrator in reply toTillytums

I would sincerely suggest that you tell your GP you have taken advice from the NHS Choices Thyroiduk.org.uk about your blood tests and have been told that to get the best result the test should be done at the earliest possible and that your results are skewed.

If he wont you can get a blood test fromone of our recommended labs and a Full Thyroid Function Test which will give a bigger and better picture and a way to good health.

Ask for a new test to be taken at the first appointment and fast (you can drink water) and allow a gap of 24 hours between your last dose of levo and the test and take afterwards.

Nearly all of the 55,000 people on this forum are those who didn't get well and, like you, arrived here for advice. I have doubts that any GP knows anything about hypothyroidism except to keep the TSH 'in range' when it should be 1 or lower.

If they keep us too low on levothyroxine we can develoip other more serious illnesses. They don't know that either.

bluebug profile image
bluebug

Gabapentin is anti-epileptic medication. Have you been having seizures? Or do you simply have lots of pain including tingling and numbness?

The reason I'm asking is the pain is likely due to a combination of under medication and vitamin/iron deficiencies.

Tillytums profile image
Tillytums in reply tobluebug

I was on Gabapentin for my Fibromyalgia, but it I didn't make any difference, but the Doctors don't accept that. I was hoping I would feel better after completing the withdrawal of it. But I still feel awful that's why I insisted on my Blood Tests. Everyone on here is so kind and helpful. So pleased I found this site. I will post my printed results when I get them tomorrow and let you know what the Dr says. I am going to mention all of the above. I have lots of print outs to take with me thanks you you all x

bluebug profile image
bluebug in reply toTillytums

If you have a full blood count done quite recently post that as well even if you haven't had vitamin and iron tested. Sometimes vitamin B12 deficiencies and other deficiencies can be indicated through out of range results in these.

Tillytums profile image
Tillytums in reply tobluebug

I will do, will put up a copy of all the results x

Tillytums profile image
Tillytums in reply tobluebug

Thanks to you all they have increased my Levothyroxine as they wasn't going to until I quoted and showed them various information from you yesterday. I am no on 50MG and have to be re-checked in 6-8 weeks. Here are my blood test results. Drs tried saying all was normal x

@Seasidesuzie @reallyfedup123 @shaws @bluebug

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