endo email

[Azurablue]

hi my endo sent me this email re my blood results

"The FT3 is converted from thyroxine taken orally by enzymes within the body hence the increase in levels in May. Although the reference ranges are the same for local and private tests, I’m not sure if the assays are the same. Our labs are under constant recalibration to reduce errors but I’m not sure of standards for the private lab. The anti –TG antibodies may suggest that you still have functioning thyroid tissue, albeit inadequate."

hmm. looks like i won't be getting the t3 i believe i need since my previous ft3 result was pretty low.

march results

tsh - 1.9, normal range 0.2-4.2

ft3 - 4, normal range 3.1-6.8

ft4 - 14, normal range 10-22

may results

gp lab

tsh - 4.5, normal range 0.2-4.2

ft4 - 19.3, normal range 10-22

private lab

tsh - 5.01, normal range 0.2-4.2

ft4 - 18.7, normal range 12-22

ft3 - 5.2, normal range 3.1-6.8

they couldn't retest the ft3 as they didn't think the Blue Horizon lab's ft3 assay was the same as the endo labs. but they managed to do an antibodies test for anti-tpo and anti-tg the results of which they attached in their reply:

anti-tg antibodies - 103, normal range 0-115

anti-tpo antibodies - 33, normal range 0-34

i don't know why they mention the anti-tg but not anti-tpo results, as the anti-tpo results are further towards the positive range surely? and i don't know if the endo is suggesting hasimoto's still as i seem to have "something".

but, i have been offered an endo transfer! i wasn't expecting that..

[Clutter]

Azura,

Your endo is saying she doesn't trust the lab who did your private bloods and the anti-thyroglobulin antibodies indicate there is some thyroid function, although inadequate. The Tg and TPO antibodies are below the ref range which would indicate autoimmune thyroid disease (Hashimoto;s).

Your March FT3 was low but has improved in your May BH results and doesn't look as if you are having trouble converting, so I agree, it is unlikely you will be prescribed T3. As you are splitting your Levothyroxine because of difficulty taking it in one dose, I imagine you would struggle to tolerate T3.

[Azurablue in reply to Clutter]

ok, thankyou, i thought the reference range for 0-34 for anti-tpo and anti-tg 0-115 meant that was negative? so it is positive? i am confused.

i thought if the ft3 was low when on levothyroxine that meant i had trouble converting. so that's not the case?

[HarryE in reply to Azurablue]

To be positive, your antibodies would need to be over the reference range. So yours are negative at present, but only just.

[Clutter in reply to Azurablue]

I wasn't very clear about the antibodies, Azura, your TPO and Tg antibodies are below the ref range which means you don't have Hashimoto's. Antibodies over the ref range indicate Hashimoto's.

Being undermedicated on Levothyroxine will result in low FT4 and FT3 but doesn't mean you have a conversion issue. It's when TSH is around 1 and FT4 middle to high in range and FT3 low that there is likely to be a conversion issue.

[Azurablue in reply to Clutter]

ok, no problem. i wasn't sure. but if my antibodies have been high in the past does that mean the hashimoto's has gone away?

[Clutter in reply to Azurablue]

Azura, If your antibodies have been above the ref ranges then you do have Hashi's. I don't think it will go away as long as you have a thyroid, however useless, but it does become dormant at times as evidenced by decreased antibodies.

[Azurablue in reply to Clutter]

thankyou, so the hashimoto's waxes and wanes, i take it. and say for example i had a blood test for thyroid antibodies there is a chance that the levels will be elevated again?

[Clutter in reply to Azurablue]

Yes, lymphocytes periodically attack the thyroid gland and after each attack antibodies will be elevated.

I'm unsure whether Hashi's disappears or simply becomes dormant when the thyroid dies or is surgically removed.

[ThyroidThora in reply to Clutter]

Hi Clutter,

I've just read your post and it has confirmed everything I thought about myself.

I was diagnosed with thyroid cancer last year and it was removed but prior to this I thought I had a problem with my metabolism but my GP refused to support me. I've been seeing an endo since my cancer who told me that the oncology/thyroid team had decided to get my TSH to 1 on Levothyroxine. This has happened and he decided 3 months ago to trial me on Liothyronine (T3) at 10mcg per day with 100mcg of Levothyroxine. I saw him my endo last week and he told me my blood results, I cannot remember the exact numbers but he said my FT3 was low at 5.3 with scope for improvement. So, your last paragragh has just confirmed what I believed and hopefully I will start to feel better once my medication is sorted.

Many thanks for your response to the post above.

[Azurablue in reply to ThyroidThora]

hi there, i hope you feel better soon. your ft3 is higher than mine! is your endo private or NHS? my doctors think my ft3 is normal but mine is one lower than yours! thankyou in advance

[ThyroidThora in reply to Azurablue]

Hiya,

I think my endo said 5.3 but I cannot be sure. I really need to get a print out of my blood tests.

My endo is NHS and not bad really considering how busy he is.

[Azurablue in reply to ThyroidThora]

thanks for getting back to me!! make sure you get a print out of the tests. i got so frustrated that my endo did not post me the results since she offered to and so in the end i marched up to my practice, politely, directly and clearly asked for them to be printed off and got them just like that. funny how my frustration acts in such a positive way. your endo sounds like a keeper!

[ThyroidThora in reply to Azurablue]

Hiya,

It's okay, and it's good that there is someone to talk to online.

I really need to get my blood test results but I'm wary of upsetting the specialists, some of them think that you're challenging their professionalism when you're not, and with my other personal problems I keep putting it on a back burner.

My endo isn't bad and he is open to trialing T3 but you have to keep on the right side of him. I know of someone that was upset by him but he thought that she was self treating on NDT and this upset him. He was a bit short tempered with me when I saw him in March because I wouldn't take the Calcium and Vitamin D3 supplements that he prescribed but I'd explained that I am allergic to the lanolin used to make synthetic Vitamin d3. His option was to admit to hospital and give me Vitamin d3 injections so that they could monitor me and be on hand if I had an allergic reaction. I didn't want this and so I offered to try the tablets. I did and I came out in a rash and my eczema, which I hadn't suffered with for years, returned. I showed him the rash at our next consultation because it hadn't cleared and his only solution is vitamin d3 injections. I explained that it is the lanolin in the vitamin d3 that is the problem and I'd rather not have the injections. I told him that I was trying to increase my vitamin d levels through consuming more foods containing this vitamin. He wants to monitor this and will organise blood tests when I next see him in a couple of months.

On another note though, he can be very personable and when I got upset and cried he tried to reassure me. Also, I had to ring him for my blood results after Christmas and I didn't ring him when I should have because my mum had died. When I rang him he was very sympathetic and told me to not trail in and he rearranged my oncology appointments. I think that he gets stressed out because he has to work at 3 hospitals and he is always busy. He ends up covering for other specialists and doesn't seem to have any support from the endo nurses anymore.

I'm going to sign off now and take my dog for a quick walk.

Bye for now,

TT x

[Azurablue in reply to ThyroidThora]

hi TT i know what you mean about feeling wary of upsetting the specialists, i was very much like that until monday when i just thought to myself "the heck with this waiting around i need to know" but that's just me. when i get frustrated it comes out as a positive thing and it is so strange how it works for me in that way! i didn't know till my first appointment with my endo that she worked across 2 hospitals and so who knows what stress she may be under. but i am so sorry to hear what had happened with your mum and that your endo was sympathetic. i hope you enjoyed your walk with your dog

[ThyroidThora in reply to Azurablue]

Hi Azurablue,

My endo works across 3 NHS hospitals and does some private work so, I guess he does get stressed out.

I'd normally be like you and a little pushy but since being so ill my brain doesn't function as fast and I cannot seem to reply in a quick and timely manner. Hopefully, once my medication is sorted I will be back to my old self and not the shell that I feel these days.

On another note, the dog walking wasn't bad but I do find him difficult at times because he is so hyper.

Bye for now and have a good weekend.

TT xx.

[Azurablue in reply to ThyroidThora]

hi TT i hope you feel better soon. i remember having a hyper dog - jack russell terrier. pulled like mad on the lead when we took him for walks...jumping up onto beds... running circles through the house... very loving animal though. 11 years we had him. hope you have a good weekend too.

[ThyroidThora in reply to Azurablue]

Hi Azurablue,

Thank you for replying. I've managed to follow the new dosage of my medications today and I don't feel too bad. My endo dropped my T4 to 75mcg from 100mcg and upped my T3 to 10mcg twice a day for 10mcg once per day. I didn't have any 25mcg or 50mcg of Levothroxine until I got my prescription yesterday hence trying the new dosage today. I did try the new dosage of T3 last Friday but I'd had a 100mcg of Levothyroxine and when I had the second dose of T3 I seemed to have more energy for a couple of hours and then I started with heart palpitations and need to lie down on the settee. This is not good when you're looking after a 22 month old toddler that's into everything! I got through it though and my hubby took over when he got in from work.

My weekend isn't going too bad, and yours?

TT.

[Azurablue in reply to ThyroidThora]

hi there, your welcome for my reply. glad your husband took over from you with the little one and that you're feeling better. my weekend is good thanks, am enjoying the sunshine and have got a lovely tan on my arms and shoulders as i am staying with friends in the south coast. still got terrible dark circles under my eyes despite sleeping so well. lost more weight though which is a small worry. i was 7 stone 9 and am now 7 stone 7. i don't get it..i can only hope that the more healthy food i eat will help with that.

[ThyroidThora in reply to Azurablue]

Hiya,

Try not to worry about the weight loss it's probably because you are doing more going out and about.

Enjoy the sun while is lasts! Up here it's dull and overcast.

TT x

[Clutter in reply to ThyroidThora]

Thora,

My endo/MD team weren't listening when I told them Levothyroxine was making me ill. I'd been recovering on Liothyronine for almost 3 months post surgery prior to RAI then went downhill on T4. In the end I self medicated and am now prescribed 100mcg T4 and 40mcg T3 and recovering. FT3 went from below range to near top of range.

Don't be shy about asking for more T3 if you feel it is helping you but hasn't quite got you where you'd like to be.

[rosetrees]

I don't see the problem with the private tests. Those results differ only slightly from the NHS results and could easily be accounted for by the test being done at a different time of the day or closer to/further from your last dose of levo. If they show anything, it is that the private tests are virtually the same as the NHS ones, so if s/he is prepared to accept the NHS ones then the private ones are also acceptable.

[Clutter in reply to rosetrees]

I think it's a form of prejudice. My endo will only accept results from his own hospital's phlebotomy dept. It would save me considerable travelling time if I could have blood drawn at my GP's phlebotomy service and results analysed by the North Middx hospital and emailed to him, but no!

[Azurablue in reply to rosetrees]

the blood was drawn at the same time on the same day. is it a good idea to send her another email to say that they could accept the private blood tests?

[Clutter in reply to Azurablue]

No. You can't force her to accept the results. If she wanted the information she could have ordered the tests herself from her own constantly recalibrated lab.

[Azurablue in reply to Clutter]

the endo suggested redoing the bloods for ft3 and that i would get a letter about this but i haven't heard anything. oh well. can't win everything.

[Hidden]

So lab results from a lab used by both Spire and Nuffield private hospitals can't be trusted, huh? Bet the endo doesn't say that when he sees patients privately at those hospitals. Or perhaps many private patients receive inappropriate treatment based on those dodgy results.

[Clutter in reply to Hidden]

I think they just don't understand that results from any CPA accredited lab are valid. One reason why hospital doctors insist on reordering bloods already done by GPs. Wasteful!

[HarryE in reply to Clutter]

My TPO & TG antibodies were repeated on the NHS by the endo after I had them done by Genova. But now he say they mean nothing anyway! I think he should be disciplined for wasting NHS resources on tests he believes are pointless

[Clutter in reply to HarryE]

Have you replied to the letter they sent in response to your complaint? Could be worth mentioning it, Harry.

[HarryE in reply to Clutter]

Not yet, still pondering!

[Azurablue]

ok, thankyou. lymphocytes show up on complete blood test results i have had done but they're always in range. they aren't related to the same lymphocytes that attack the thyroid as such are they?

[helvella in reply to Azurablue]

The trouble is that it is only specific lymphocytes that attack thyroid cells. The FBC blood test does not identify which lymphocytes are present - just a single value.

So it seems perfectly feasible to have a totally unexceptional lymphocyte count even when your thyroid is under attack.

Rod

[Azurablue in reply to helvella]

ah i see. ok, i wasn't sure. thankyou

[Clutter in reply to Azurablue]

Yes. Lymphocytes attack viral and bacterial invaders as part of the body defense system but sometimes things go awry and they turn on the body's own organs ie the thyroid in Hashimoto's and Graves, the joints in rheumatoid arthritis etc.

[Azurablue in reply to Clutter]

i didn't realise they only attack viral and bacterial invaders but i guess i should have thought of that in cases where lymph glands swell up. thankyou