1st Blood Test after being on T3, doctor panicked last night we think.......

[PicklePants]

My husband has had an underactive thyroid gland for around 10 years now. Over that period of time his Thryoxine was increased and increased to 225mcg. However he still felt as rough as anything and in the last 18 months he started having severe joint and muscle pains. He was at the gp's every few weeks having blood tests for everything our gp could think of. The pains started after we returned from a holiday in Spain, we went through vit D deficiency, virus picked up in Spain, the works but nothing helping with the pains. His thyroid was obviously checked regularly and appeared to be ok.

To cut a long story short we paid to go privately and saw Dr (Mr?) Skelly who examined him and said that a T3 trial could be possible, he would write to our gp and let them know. Unknown to us he did write to the dr and suggest a T3 trial but our dr didn't pass that on to us, I assume due to the cost.

Another 6 months down the line we both went to see the gp and almost demanded T3 as we had tried everything under the sun and Simon was still feeling as ill as he had 18 months before. Our gp then spoke to Dr Skelley and he suggested trying him on 20mcg twice daily and to test his levels in 8 weeks.

Overnight, literally, the pains went and Simon felt SO much better, it had worked and we were over the moon about it. Recently though he has been feeling more and more tired, the pains have not come back, no grumpyness, just extreme tiredness so we were expecting the Liothyronine to be increased.

Simon had his blood test done on Thursday morning and last night at 7.15pm we got a call from our gp. He said that the results were very worrying and out of proportion and nothing like any results he had had at all. The gp had been trying to contact someone for some advice as it does need upping but he doesn't know by how much. He couldn't get hold of any Endocrinologists and was that worried that he wanted Simon to go straight to A&E, which we did. That to be honest was a waste of time, the consultant we saw was not up on the Thyroid at all, I had 'words' with him as he tried tellling us that he just needed Thyroxine and T3 & T4 were exactly the same drug. After a disagreement he said that he didn't know what we expected him to do. He said that Simon needed to have a scan on his neck and his Thyroxine increased, which we said he didn't take!! He then went off and rang a Medical Examiner for some advice. He came back with a totally different attitude and said that no one could advice on the level he needed to up his drugs too so we should wait until Monday and contact Dr Skelly first thing. Simon didn't need to be kept in as he looked quite well, although totally exhausted, but, if he had any symptoms over the weekend he was worried about or didn't like then to go back and they would admit him until Monday when some advice could be sought!!

We came home very worried and are now waiting for Monday morning so we can call the consultant.

His blood results were:

Free T4 - 0.4

TSH - 79.39

No T3 results (our pct don't like testing T3 even though the GP asked for it!)

Can anyone offer any advice please?

Sorry for the waffle, just wanted to give you a bit of background too

Many thanks

Nikola x

[PinkNinja]

I'm sorry you are not getting the treatment for your husband that he needs

A free T4 result is useless if he is on T3-only treatment and they should have done a T3 test like the GP requested. Perhaps next time the GP could write "on T3-only therapy" or something. They may do it then.

The results are not unusual in themselves. As he is not taking any T4 we would expect that to be low. His TSH suggests he is very under-replaced and needs an increase of T3 asap! (although I am not a doctor, so please bear this in mind). From his TSH and T4 results, it looks like his thyroid is not doing anything much any more, in which case 40mcg T3 is probably not anywhere near enough. He may also have other issues, such as malabsorbtion problems, as well that mean he is not getting enough of the T3. This would become more obvious once the dose is increased.

If the GP is willing to listen to an explanation from a lay-person, the results show that his thyroid is not doing much at all and that he is definitely in need of more thyroid hormone (hence the high TSH). Taking T4 as well may help but so would taking more T3. In someone who is taking T3 only, the T4 result isn't much use but a T3 test is very important!

I hope you manage to get some help for your husband soon!

Carolyn x

[Hidden]

Hi Nikola

I had heard that Dr S had left the country? Is he still around at Col Gen then..!? Ta xx

[PicklePants]

Thank you for your reply Carolyn, that makes perfect sense to us. In our GP's defense he did put on the blood test form that that Simon was on T3 only, the blood testing unit are a law unto themselves Luckily our GP is very wiling to listen to our points of view and I will be speaking to him on Monday morning so will relay what you have said, which is also what we were thinking.

Louise - Dr Skelly is still in the country as far as I know, not sure if he is still at CGH but he certainly is at The Oaks as I rang them last night to see if we could get hold of him at all. I'm sure they would of told me if he wasn't there anymore??? Fingers crossed!!

[PicklePants]

I've just rung the Oaks and he is still there apparently, the receptionist double checked for me so fingers crossed she is right!

xx

[Hidden in reply to PicklePants]

oh cool! I can add him back on my list again! Thanks!

xxx

[nobodysdriving]

If Simon stopped the T4 completely and he is ONLY on 40mcg T3 I am not surprised in the slightest about his blood test result to be honest and in how rotten he feels (fatigue wise), 40 mcg is not much of a dose to be honest, some people feel ok on 40mcg I would 'die' if I was on so little. His symptoms and his TSH show he needs to increase the T3, the fT4 being next to zero is normal on T3 only and does not matter.

Hope you get to speak to dr skelly soon

[PicklePants]

Thank you for the reply, I too thought that it was a very small dose but as his joint pains went literally overnight we thought it was nothing short of a miracle and thought that it would be ok for him, obviously not!!

Do you know what a 'good' TSH level is on T3, the same as T4 I assume?

Many thanks x

[Clarebear in reply to PicklePants]

When on T3 only (or combined with T4), TSH is usually suppressed. Mine is < 0.02 and I am feeling well xx

[PinkNinja in reply to PicklePants]

The joint pains may have disappeared overnight because he was no longer taking the thyroxine. I had severe joint pain on thyroxine and I also found that the joint pain disappeared almost overnight when I stopped it. I have managed to get to a quite respectable dose of NDT (4 grains) without the pain returning, but I still don't feel 100% (although so much better then on thyroxine!) I may have to go back to T3. That's the last time I felt truly well

[PicklePants in reply to PinkNinja]

Fingers crossed you get sorted soon Carolyn xx

[Clarebear]

Lots of people seem to have join pains on T4 and these people do often seem particularly suited to T3 only. I totally agree with all of the above advice. I hope he gets the increase in T3 soon, and the good progress continues xx

[PicklePants in reply to Clarebear]

Thanks Clarebear, I will be on the phone to them at 9am in the morning and won't stop ringing until I get an answer! I am hoping that as soon as the T3 is increased he will start to feel better very quickly xx

[PicklePants]

Crickey in that case 79.39 is quite high then!!

Thank you for all of this advice, its great that I have as much 'knowledge' as possible when I ring on Monday!

I can not see a problem with getting it increased at all its just fingers crossed it can be sorted on Monday. I still fail to understand why they didn't test the T3 though, damn blood test people think they know better than the doctors!!

[linda65 in reply to PicklePants]

Hi PicklePants, Just read your post about your husband. Don't panic too much..my first result on 30 mcg T3 only was TSH 46.3, T4 less than 5.2, but FT3 was 6.27. On 35mcg it was TSH 34.8 and on 45mcg it was TSH 4.7 and FT3 5.9. Every time the T4 was less than 5.2 as my lab don't measure below this level. It only takes a small increase to lowe the TSH. I am still working on it! best wishes Linda

[PicklePants in reply to linda65]

Thanks Linda,

To be honest it was the gp who panicked us but now we have had some reassurance from here and some friends we should be grateful really for some great support and good consultants, I am sure it will be sorted very soon. Hope you get sorted soon too xx

[shaws]

To reassure you this is an archived link (Dr Lowe himself took T3 from about the age of 19) and died last year due to an accident. He could not have functioned at all on anything but T3.

web.archive.org/web/2010122...

Some of his patients need supraphysiologic doses of T3 to get well.

[PicklePants]

Thank you Shaws, I will go and read that now :O)

[Triciatextiles in reply to PicklePants]

Hi - my husband saw Dr Skelly under the NHS.

He had to go back to Dr Skelly when his GP would not increase his T3 from 20mg X 2 a day and he was still feeling ill. Dr Skelly wrote to his GP to inform him that he should manage his T3 through his TSH results only and that he could increase his meds to 20 x 3 a day. Like your husband within 2 days his health improved (had told by GP had ME and sufferred severe pain in all joints and muscles). Ironically, as the T4 left his system he began to get more tired again.Now his TSH is low and still feeling very tired. I know that Dr Skelly prefers T3 only but I wish my husband had tried T4/T3 combo first and I think this may have suited him better.

[PicklePants in reply to Triciatextiles]

Thank you for your reply, its very helpful. We are not having a good morning to be honest. Hubby is very stressed indeed

[PicklePants]

We are not having a good morning. Unfortunately it appears that you guys here who said that Dr Skelly had left were indeed right, we has emigrated We are flabagasted that The Oaks were not aware that he had left!

Simon has been passed onto a Dr Bodmer, he spoke to his secretary at 9 this morning, she promised to contact Dr Bodmer while he was in clinic and come back to us. We havn't heard anything yet and its just going through to voicemail. Simon is getting in a bit of a state as he had to phone in sick this morning and being self employed this is not great. He is not well enough to work and we hoped that he would get sorted out today. Not sure if we are expecting too much though

I will let you know how we get on later, thank you so much for all of your help so far.

[PicklePants]

Update from this afternoon....

I'm not sure what to make of it to be honest but I'm sure that someone can shed some light on it for us. Simon was on 20mcg of T3 twice a day

Simon has been passed to a new Endocrinologist, Dr Bodmer from CGH, he works at The Oaks as well in Colchester. Simon got a phone call from Dr Bodmer hinself this afternoon to have a chat, he had been through Simon's notes and previous blood results and thinks that he may need a combination of T3 & T4, this is the bit I don't understand. He wants him to reduce the T3 and take

10mcg T3 & 100mgc Thyroxine in the morning

10mcg T3 in the evening.

Surely this is a reduction?? Dr Bodmer said that 10mcg of T3 was equivalent to 100mcg of Thyroxine. Simon got in a bit of a pickle when he got off the phone and couldn't remember what Dr Bodmer had said to take so I rang the hospital back and spoke to him directly (again very nice of him to take my call) to clarify what he wants Simon to take an it was as above.

He wants him to have a blood test in 8 weeks. He said the reason for the mixture is that Simon's blood test in December showed a good level, even though he felt like poo.

Any thoughts or suggestions please?

Many thanks

[Triciatextiles]

To be honest as per my previous reply I think that trying T4/T3 combo is a good approach. I wish my hubby has tried this. It makes sense to reduce T3 if he is adding in T4 again. This Dr Bodmer sounds sensible to me - I may suggest that my hubby contacts him now Dr Skelly has left. I hope your hubby begins to feel well again soon.

best wishes

[PicklePants in reply to Triciatextiles]

Thank you so much for your reply, greatly appreciated. I really did think I understood this thyroid stuff but the last week has shown me that I really don't know anywhere near enough!

Dr Bodmer is on the nhs at CGH, I was very impressed with him calling Simon back himself today, and he apologised for taking so long to ring back! I was just confused by the combo approach, time will tell if it works for him.

I do feel happier now I know that someone is on the end of the phone

take care xx