Hi, I would appreciate any advice, please. I am 39 and was diagnosed 4 years ago with an underactive thyroid, but I am still suffering.

[ShellyM]

I have remained with the same doctor throughout, and during this time my dosage has increased from 100 to 150 mcg of levothyroxine. However, I have returned to the doctor this week, saying that I am still feeling extremely tired, my dose was last changed in July of this year from 125 to 150 mcg.

On the previous 2 occasions, I was told that my levels were "normal" by the receptionist and thought "okay - it's obviously just me". However, when I pushed, I was told that they were at the bottom end of normal and that my doctor would now look at increasing the levels. Why didnt he say that before?? Also, when I see him, he asks if I smoke, drink, which I dont.

Over the last few months I have managed to lose over a stone in weight and currently am 11 and a half stone. He didnt even say well done when he weighed me this week. But then he asked how much exercise I do. I said, I walk and lead a busy life and occasionally swim when I have the time - I have 2 school age children as well. Then he started quoting the World Health guidance on how much high impact exercise I need to do. I told him it is very hard to do this when I am feeling so tired! I do lead a very busy life and this is getting me down. He then said that he feels I am depressed - I said I am only depressed because I am always feeling so tired!!

My other blood results are normal, ie kidneys etc. I know I need to be more assertive. I did mention about getting my t4 checked and he said it is not something that the hospital will do! Can anyone tell me if I can "demand" to see a specialist, if need be I will pay? I think I will also ask to see another doctor. Any advice on what my rights are would be appreciated.

The way I feel is affecting my family life, and I dont want to feel like this any more.

[Irene]

I'm shocked Shelly. Unfortunately more and more gp's are going to buy into the 'obese patient' programme and just focus on weight. I think you should be firm. Take someone with you who you feel confident with. Explain to the doctor that you have given the meds a good period of time to make a difference but it's obvious you are still not feeling good. This impacts your life and that of your children on a number of levels. You would like to be referred to an endocrinologist, who would he recommend. If he attempts to brush you off, just keep saying that you hear what he's saying but... and then repeat your request. If he won't move on this ask him to explain why. He certainly can't say it's because he's managing your treatment so well when he obviously isn't! I know it's terribly frustrating and very difficult to be strong when you're are feeling so tired and low but try to push forward. Taking someone with you will certainly be of benefit. If you really don't feel you can face a confrontation perhaps you can ask your companion to speak for you (after you have briefed them on what you want). I did that once when I was a gibbering wreck. It worked wonders to have an articulate person accompanying me Good luck. Don't forget to update on how you get on.

Irene

[Sheila2]

HI Shelly

I would just like to add to the other comment (which I completely agree with).

You should have your T4 level checked and as for the hospital (lab?) not doing it! well what he means is he doesn't want to spend the money. This makes me so mad. Happy to dish out antidepressants but not sort your thyroid out because the right test will cost a few quid. The lab will test what the doctor asks for if that lab doesn't do it then it will be forwarded to one that does (I have had this done a couple of times now) the t4 test is relevant to give a better overall picture and is your right.

[helvella in reply to Sheila2]

Sheila,

Unfortunately that does not appear to be the case. I have seen a GP write on a form that he wants fT4 test - and the lab simply ignores that because the TSH is within some range. (This range may not be the same as the reference range for TSH.) The test would only have been done if the doctor specifically contacted the lab and made arrangements, and the lab agreed.

And, this is a lab that is quite capable of doing the fT4 test if they see fit. No need to send out for it.

The full documentation that the labs provide to GPs may explain when they will do certain tests, or how to make arrangements, but is unlikely to be to the GP's hand when filling in the form.

Rod

[Chippysue]

Shelly, this just is not good enough! The first step is for you to ask your doc's receptionist for a copy of your blood test results. Have they ever tested your free T4?

Your TSH should ideally be under 1 and your free t4 at the top of the range. I do not accept this nonsense that the lab decide not to test free t4. I write on the blood form myself that free t4 is needed and it gets done.

Your GP needs to see a copy of the Pulse magazine from April time which give docs advice when hypothyroid patients are still struggling. If your TSH is under 1 then the next step is to have a little T3 added.

I wish that I could say that you would be better off seeing an Endocrinologist but unfortunately they are not all helpful, where abouts do you live?

[ShellyM in reply to Chippysue]

Hi all, many thanks for all your comments. I have been to the nurse today and had another blood test - results to follow. I asked the receptionist for my blood results previously, and here they are:-

on 7.4.09 my Serum TSH was 6.51 (range 0.35-4.50) and my FT4 was 15.4 (range 11-24)

on 14.7.10 my Serum TSH was 10.0 (range 0.35-4.50) and my FT4 was 15.8 (range 11-24) - following this my doctor increased my levothyroxine from 125 to 150.

These were my last 2 test results, with me originally being diagnosed in July 06.

I will post the results from today when I get them. Any comments on my above results please?

I am going to book an appointment to see the same doctor with my hubby when the results of this test are known. He is more assertive than me! If we have no joy, I am going to visit another doctor in the practice to get a second opinion. I will also enquire about seeing a Endocrinologist, even if I have to do this on a private basis and pay.

I feel determined to move forward with this, as I am fed up with not being able to enjoy life, and up till now, I have thought that my doctor knows best, but now I am not so sure.

In response to the above, I live near Truro in Cornwall.

[helvella in reply to Chippysue]

From what I see, it is not at all clear why you didn't get an increase in April.

It looks to me as if your GP is taking TSH value of 10 as a trigger for a raise. This used to be the trigger to commence treatment but has been shown to be way too high for that. When treated I would expect a TSH of 2 or lower.

I wouldn't hold my breath about an endocrinologist - you might be lucky, but it is probably better to get a GP who is at the better end of the scale.

Agreed with Pulse article. Also pick up the Thyrodi book by Toft available in almost all pharmacies.

Rod

[ShellyM in reply to Chippysue]

Hi all

Just to keep you up-to-date. I have had an appointment with an endocrinologist, who has taken more blood and I have done a 24 urine test re Cortisol. He is prepared to try me on a combination T3 and T4 for 3 months, when he will see me again in April. So at least things are moving forward at last. Unfortunately I have to see my GP to get my results next week and to be prescribed the the T3. Let's see what my GP has to say this time!!

Shelly

[helvella in reply to Chippysue]

Let's keep our fingers crossed that goes OK.

In the UK we can only get 20 mcg T3 tablets. But remember that you can split them in order to adjust the daily dose - or to take in multiple doses in a day. And of course you can do that if needed, even if formally prescribed something like 20 mcg once a day. In the US they have 5 mcg tablets as well which potentially helps.

Rod

[ShellyM]

Hi, just thought I would update re how I am feeling. I am currently taking 20mcg T3 tablets and 50mcg of levothyroxine. I am feeling SO MUCH BETTER! I no longer get the wave of tiredness in the afternoons, and my energy levels are much improved. I have been taking this for nearly 4 months. My last serum TSH result was 3.14. I am due another blood test in a couple of weeks. My Corisol results were normal. However, they did pick up indications that I may be starting an early menopause, which may be some of the reason for how I have been feeling.

I am so relieved that at last, I am feeling more like my old self. When I saw my GP a couple of months ago, he was much more considerate.

The endocrinologist is happy to place me back under the GPs care, so we shall see how I go on.

My only question is, is there anyone with any experience as to the longer term effects of taking T3 and T4? I havent had any side effects, and hope that I continue to feel better

My advice to everyone is dont give up!