Hallelujah

[Blister4]

Well they’ve actually agreed to trial my son on thyroxine (Hashimotos). However the labs they use don’t show individual results for T3 and T4 they combine the two results and provide an overall result? This is new to me, have any of you lovely people come across this before?

[greygoose]

Do you mean the TSH result?

[Blister4 in reply to greygoose]

No, the T4 and T3 results are combined to make one overall result!

[greygoose in reply to Blister4]

That's the weirdest thing I've ever heard. How can they do that? What was the result called?

[Blister4 in reply to greygoose]

I know it’s barking mad! Why would a lab do that? I just remember thinking well I’ll be paying for private tests.

I’ve tried to reason it in my head but I can’t see any advantage to it.

The doctor didn’t give it a name just explained it as I have above.

[greygoose in reply to Blister4]

Do you not think that perhaps your doctor was a little confused. To be able to combine the two results, they would have had to test them both. If they tested them both, I can see no reason why they wouldn't give both results. It makes no sense. If I were you, I'd ask for a print-out of the results to see exactly what was tested - ask at reception - if you live in the UK, it's your legal right to have one. Don't just go by your doctor's garbled account. There's no guarantee he's got it right.

[Blister4 in reply to greygoose]

She said that is just how their labs do it.

I will get a print out and I’m curious as to how it appears as a result!

The mind boggles!! Just when i thought I’d heard all the weird and utter garbage that comes out of some doctors mouths!

Gobsmacked!!

[greygoose in reply to Blister4]

I can imagine! lol

[helvella Administrator Thyroid UK in reply to Blister4]

I, too, am fascinated at what they have said.

My best guess at the moment is them getting the wrong end of the stick and it being TSH but the doctors thinking it is something else.

Which lab is this? Most NHS labs have their Laboratory Handbook (or whatever they call it) online which would allow us to look at what the lab itself says. If you do not wish to say on forum (and I fully understand that), maybe you would let me know by Private Message?

[Blister4 in reply to helvella]

I am not sure which nhs lab it is. My son is at university in Lancaster so he’s being treated by a local GP.

I could try and find out which lab they use.

Let’s hope she’s got it all upside down, it’s worrying me slightly. From my experience GPS have little knowledge on treating thyroid conditions and in this case having no individual results to refer to!!

[helvella Administrator Thyroid UK in reply to Blister4]

On the University Hospitals of Morecambe Bay site (Furness General Hospital, Royal Lancaster Infirmary, Westmorland General Hospital, Queen Victoria Hospital, Ulverston Community Health Centre), they have what appear to be completely standard tests:

FT3 8 hours 48 hours yes 48 hours

FT4 8 hours 48 hours yes 48 hours

TSH 8 hours 48 hours yes 48 hours

uhmb.nhs.uk/our-services/pa...

But at the Lancashire Teaching Hospitals site, I could find NO mention of FT4 or FT3 at all. Not even in their specialist tests. Maybe someone else could check?

lancsteachinghospitals.nhs....

Somewhat concerning if teaching hospitals are not doing FT4 and FT3 tests at all. Hopefully my mistake.

[JAAC in reply to Blister4]

Maybe get his bloods done locally while he is at home for Christmas. You need to ask your GP for a T4 and a T3. In my area it has to be a consultant who request a T3.

[Blister4 in reply to JAAC]

Good idea....I was wondering if I Should get him in with our gp before he goes back to uni.

Isn’t it just crazy only a consultant can order a T3!!

[LAHs in reply to Blister4]

While he is home, get a private total thyroid panel (from medichecks (sp)). It will take months if not years to get all of his information via the NHS.

[LAHs in reply to helvella]

I wonder if they are doing T4 and T3 then just reporting the ratio - which would be useful. However, they shouldn't just throw away the original measurements - they are even more useful.

[Blister4 in reply to LAHs]

I’ll have more of an idea on Monday when we get the results as to what they are actually doing with the two results. It’s not something I’ve heard of before or even understand!

[Welshcake1983]

How old is your son if you don’t mind me asking. I was put on thyroxine at age 13.

[Blister4 in reply to Welshcake1983]

Hi, he’s just turned 18, diagnosed with Hashimotos in March this year.

Have you had any problems taking the thyroxine?

[Welshcake1983 in reply to Blister4]

No I’ve had no problems it can take a while before he is at the right level. Unfortunately I’ve been one of the unlucky ones and ended up with a multitude of autoimmune diseases. I’m 36 now so I’ve had Hashimotos for 26 years. Tell him to stay positive and that he will feel better once he’s on the right dose. It’s naughty that they did not start the treatment when he was diagnosed. Dr always think it’s an older ladies disease but there are many of us males with hypothyroidism. Don’t hesitate to message me for advice I know how he is feeling. Hope he’s back to his usual self very soon.

[Blister4 in reply to Welshcake1983]

Thankyou so much for your support and advice.

I believe these autoimmune disorders hunt in packs!

It’s heart breaking to watch your child suffering and struggling. He just keeps saying I’m okay mum! It’s been difficult as he’s gone off to uni and I don’t want it to interrupt his study too much.

I feel better having chatted to you knowing you have also gone through this at a young age.

I will definitely pass on your support and we can’t thank you enough.

[Welshcake1983 in reply to Blister4]

My parents where the same. I managed to get through college and uni but unfortunately not able to work any more due to my other conditions. I’m sure he will do fine all the best

[Marz]

Am watching an on-line summit at the moment sharing information about the health of the gut and illness. Auto-immune issues are comparatively a recent phenomenon and the finger is being pointed at the gut micro-biome in many cases. Modern diets do not support the gut. Did your son have skin problems in adolescence?

I have Crohns and Hashimotos. Had Gut TB at 27 - in spite of the vaccination in my early teens ... 😥

[Blister4 in reply to Marz]

Yes I’m a believer through reading that the gut plays a massive role in health and is the path to good health.

I’m a nurse and a nutritional therapist and I love learning about food and what it offers in terms of health benefits.

My son had eczema from a baby and has a milk allergy both my boys have it!!

Wow you’ve been through a lot, crohns is awfully debilitating.

I guess a cleaner simplified diet as was years ago, no additives preservatives, less sugar.

I wonder about the genetic side, if these auto immune disorders are and can be hereditary is there a gene mutation or gene indication?? I don’t know but it intrigues me. Xxx

[Marz in reply to Blister4]

The skin issues do suggest gut issues - sigh ! Sometimes hidden issues take time to reveal themselves - so good he has a diagnosis as many of us wait years. He has time to work on his health. I was 59 when I was diagnosed in Crete- back in 2005. I gave up on Crohns meds many years ago and apart from the surgical scars you would not know I have/had it. Sadly I now have conditions caused by the mal-absorption but I continue to work on it all.

Has your son been tested for B12 - Folate - Ferritin - VitD ?

[Blister4 in reply to Marz]

I also have Hashimotos and I was so mindful of my son also having it. When he started loosing his hair I pushed for bloods and yes there it was!

I do feel lifestyle changes and diet are paramount with autoimmune disorders.

You’ve obviously worked hard on your health, we are definitely our best advocates and arming yourself with knowledge is important.

Yes his ferritin keeps dropping and he’s supplemented at the minute.

B12 could do with being higher in the range.

D3 I can’t just remember but he does supplement as he’s somewhat of a hermit! I believe we should all be taking d3 and co factors. Sadly I don’t see many Gp offering frail elderly D3 despite it being in the guidelines (over 65 and largely institutionalised).

Gosh I’m on my high horse today!

Great chatting to you ... got to go off to work now.

Take care

[JaneChapple]

Hi Blister4

Sorry to hear about your son and I hope he gets sorted soon. In order to get my son diagnosed who is now 25 I had to jump through many hoops even to get them to believe that he had Hashimotos. I knew he had it as I have it too. Of course Id rather he didnt have this dreadful disease. He was put on 18 month trial of levo which helped and got his results into normal range. We then see the local endo who is also clinical lead and she says she didnt think it was working even though results were normal, blamed it on him being special needs and wanted to contact his social worker - this was all put down in a letter by the way. I tried to tell her but she wouldnt listen so GP had to take him off. The GP said that at least if the results went back up we would know the answer, as indeed they did. Saw an endo in Weston Super Mare who asked if I agreed for him to come off which of course I didnt. He wrote to GP confirming he was hypothyroid and to put him back on the medication, It took him ten minutes to diagnose just by taking his pulse!!!

It took me 7 yeats to get this sorted. Considering you are supposed to be on these medications for life its surprising that they seem to be able to take patients of this medication at the drop of a hat?! I sacked both the social worker and the previous endo!!!

Just been to surgery with hubby this morning who has been really poorly recently and they want him on ADs and diazepam saying its anxiety even though he has been in much pain. We came out in tears!

Very fed- up with the medical profession to say the least!

By the way dont know where you live but I can pm you details of the chap in Weston Super Mare if you need a good endo. He has an interest in thyroid. Indian chap but very approachable. He also operates from Bristol and Taunton privately, but not sure if he does thyroid from there.

Hope you get things sorted soon. As you say its horrid seeing your child suffer. Things just seem to be getting worse and not just with thyroid treatments. Dont quite know what the answer is thats for sure!

Regards

JaneCx

[Blister4 in reply to JaneChapple]

Oh gosh, I feel for you. It is such a lottery as to whether you get a good endo or Gp! They are the gateway to treatment and good health. It’s exhausting and frustrating having to constantly battle.

I was very fortunate with my sons gp, however the endo refused treatment but a wonderful dermatologist has offered treatment how ironic! I thank the lord everyday for bringing that man into our lives!

Oh I do hope your husband finds some relief. It seams to be their answer to every thing AD’s.

I’ve had a similar experience recently. I too have Hashimotos however all my results are low but I have all the miserable symptoms of hypothyroidism. He tried to tell me it was all psychological and that it was probable fibromyalgia?! I left in tears and know not where to turn.

Thankyou for the offer of the endo’s information, unfortunately we are up north so a little too far to travel but very much appreciated .

Keep up the good fight you are got families best advocate xx

[JaneChapple in reply to Blister4]

Thanks Blister4

Yes my hubby was offered psychology support yesterday too - why dont they realise if they got to the root of the problem there would be no need for it?!

Good luck with your son and your health!

JaneCx

[Myro]

I would do all thyroid hormones test. Antibodies too. Iodine level should be.fine. Take copy of resaults. Ask for second opinion or ask with resaults on our page. If wont to understand things read about symptoms of hipotiroditis hipertiroidis and lack of iodine and conseqvences of each. Don't believe anyone or anything even yourself. Check test prove.