Should I push for treatment

[janninelibra]

Went to doc feeling tired, down, irritable and unable to lose weight. I have had my thyroid tested 4-5 times over the years at doctors request but was always told levels were fine. So when doc suggested it this time I thought it was pointless but went ahead. Recently rang for the results and was told I could potentially develop hypothyroid and should be retested in 3 months. My TSH levels were 18.4. Should I go back to doctor and ask to be retested sooner or ask for treatment as I don't think I could bare this for another 3 months. Thanks in advance

[Jane104]

Hi Jannine, That's almost exactly what happened to me. Had several tests over a few years with similar symptoms, all the time being treated for depression, and being told tests were 'normal' or 'borderline'. Like you, when a different doctor suggested more tests I didn't go as I thought they were pointless. A couple of months later he persuaded me to have them and I was finally diagnosed as hypothyroid. They normally want a re-test to make sure it's not a blip due to something else like a virus for example.

You really need to give the lab ranges to read your results in context, but even without them I'd say 18.4 is high. How long ago was any previous test and what was the result? You could argue that as you have been feeling unwell for sometime it is unlikely to be a blip. Did they test for thyroid antibodies too? If this is positive it would add weight to your argument, but a negative result doesn't mean you're not hypothyroid.

[merissa in reply to Jane104]

Yes you need to pursue treatment, maybe a trial. Xx

[Jackie]

Hi Ridiculous, of course you need treatment. I would if possible get TSH, T4 and Free T3 done on line, results to you. I think that would prove you need treatment now.TSH is not a good guide on its own. Also always ask for a print out + ranges ( vary) from receptionist, your blood ,so your right.

Best wishes,

Jackie

[PinkNinja]

You don't need to wait three months, only a few weeks - if at all. There are circumstances such as illness that can cause a high TSH, which is why they like to retest, but only a few weeks' wait is necessary. Your local lab may have a 6 week limit on how often you are able to be tested but definitely don't wait 3 months.

Personally, I wouldn't think a TSH that high could be caused by anything like a virus because you have felt hypo for quite a while and this is much higher than I would expect for a virus or other illness. I think you should push for treatment, especially if your T4 is low.

I am assuming your T4 was tested because your TSH is so high, so do get hold of this result. If it is low, you need treating now. If it is in range, a repeat test in 6 weeks is more than cautious enough.

I hope you get your treatment!

Carolyn x

[janninelibra in reply to PinkNinja]

Thanks. Not sure if my T4 levels were checked if so they didn't provide me with the results. I've made an appointment with my dr and i'm hoping they will take action as I feel like I am living in limbo.

[Lindsay]

18.4 is high you should have been prescribed levothyroxine. I would ring your doctor, if I were you.

[CamillaB]

I would say it is totally unacceptable for them to send you away, feeling like you do and with such high TSH, to suffer for another three months. This kind of thing really bugs me about GPs because if it was them feeling so rubbish they wouldn't let themselves plough on feeling that way for another 3 months! Glad you are going back to see the doc and insist on some meds. i thought that over 10 in TSH meant they would treat you. Definitely ask for a print out of your last blood results when you see GP as they have to give you that

[janninelibra]

Thanks for all the responses. They've given me the courage to question the doctors recommendation. doctors very busy i can't get an appointment until next week so I guess i'll have to sit tight until next tuesday. I'm reluctant to speak to the doctor over the phone as i think that would make it easier for them to palm me off (i hate to sound so suspicious but i feel like if i didn't push on this they would be happy to let me plod on). I don't understand why they said i 'have the potential to develop hyperthyroidism' surely my TSH level would suggest something is wrong NOW!!! Any way i'll have to wait and see.

[Hidden]

Hi Jannine

I'd recommend calling them for a telephone discussion and try to get some support before next week. When I phone I write down everything I want to ask, so I can't be palmed off or get too nervous to ask. I'd also be prepared to ask for their complaints policy if you don't get the treatment/advice/service they're paid to give. Asking about the complaints policy can help get things moving... I'm sure they'd prefer to leave you for as long as possible... but what do you want them to do? Haven't you felt unwell and suffered for long enough? I also thought the guidelines state that a TSH level above 10 should be treated with levothyroxine... Good luck.

[janninelibra]

Hi bit of an update. Got my printout of my blood test. Tsh 18.12 (0.3-4.2) Ft4 11.1 (10.6-23.2). Doctor said my T4 was fine so i have subclinical hypothyroidism. She did agree to give me a 1 month trial of levothyroxine 25 mg but said in her opinion i am depressed. I refused to take anti depressants until i see if this trial makes me feel better. Any thoughts?

[PinkNinja in reply to janninelibra]

That is ridiculous! You are hypothyroid with a TSH of 18.12. She should be treating you regardless of your T4. If your TSH is above 5 but less than 10, it is up to your doctor but with a TSH that high you need treatment. Anyway, your T4 is only just in range!

I don't think 25mcg will make a huge difference but it might make a tiny difference. You should push for an increase next time to 50mcg. Insist on a blood test. She should be aiming to get your TSH towards the bottom end of the range. If she refuses to do this, you need to see a doctor who knows what they are talking about. What is the point of TSH being the 'gold standard' with a specific reference range if she is going to ignore it?

Your T4 is very low in range and you are almost certainly not depressed. Keep fighting! You deserve treatment for your condition.

Carolyn x

[PinkNinja in reply to janninelibra]

I have just read through the guidelines for treatment of subclinical hypothyroidism and it stated that if the TSH is above 10 the patient should be treated.

Here is a link to the guidelines. These are the guidelines that GPs are recommended to follow. Although we don't agree with many of the things in these guidelines as they are too simplistic, this part is something we do agree on. Many of us feel that treatment should commence at much lower TSH levels than 10 for subclinical hypothyroidism in patients who have symptoms.

Your GP should now be prescribing levothyroxine just as she would for someone with overt hypothyroidism in that she should keep increasing until your TSH is low enough in the range to make you feel well.

british-thyroid-association...

You need to scroll down to the top of page 28.

I hope this helps your argument.

[Inna in reply to janninelibra]

Hi, wanted to share with you my own experience. My first endo also prescribed me 25mcg as a starting dose. Some people dont feel a thing on such a low dose, however, I started feeling much worse and my TSH went up even more when I got re-tested in 4 weeks. So, if I were you, I'd go see another doctor first.

[janninelibra]

Carolyn thank you so much. I was starting to feel like a hypochondriac but these guidelines make it very clear that i should be receiving treatment.

It makes sense tho my body is producing so much tsh because it wants more T4/T3. I did comment that the T4 was at the lower end of the range but she said its normal and not a concern. I do feel that 25mg is to low a dose to make a difference but i'll give it a go. Luckily tho i'm going to the states tomorrow to visit my mother in law who is an endocrinologist out there. Maybe she can shed some light.