Antibodies rising but hormone levels OK - should I be worried?

Hi, firstly thanks to everyone posting here who've helped me understand hypothyroidism better, and sorry this will be long winded! I've been having Medichecks reports as I've been feeling very ill recently and my energy and cognitive function have been awful, a yoyo for a year or more. I've learnt I have Hashimoto's and I've gone gluten and diary free 2 weeks ago, although I've tested negative for coeliac disease I understand it may help get my antibody levels down and slow my thyroid destruction. I was diagnosed Oct 2012 aged 50, and probably had it some time. Although in 2012 my TSH was only just over range on advise following a BUPA medical I insisted on starting Levothyroxine rather than "wait and see' as my GP wanted! I've gone from 25mg to 100mg increasing the dose when my energy lowered. I know stress is triggering my "crashes" but my TSH is very low so a further dose increase is not possible (NHS anyway) and probably not advisable due to anxiety. I have always had a slow pulse (had a fitness check at a gym before I was diagnosed and she thought her pulse monitor was broken!!)

I've just got results today showing my antibodies are even higher what levels have others seen on their results and have they come down again? I was advised to get a scan by a member, but don't know if the GP will agree, I've never been referred to en Endo and I don't know if it would make any difference to treatments?

I'm really surprised as my TSH has dropped, this is the first time I've not take the meds before the test. It was under range last October because I took extra 1/2 of my 100mg for a few days over a few weeks to give me a boost (not a good idea I know) but it worked as I ran my first Half Marathon, then I stopped exercising over the Winter and depression hit (again). This time I'm avoiding SSRIs as they just sedate me!

I have just started HRT (menopause started September 2017 so probably another factor, and (learnt from here) I've started taking Vitamin D (just got more with K2 added) Selenium, plus have been taking zinc, magnesium, Omega 3, iron & vit Bs plus amino acids L-carnitine and trialling 5-HTP. I was also taking 7 Keto DHEA and l-tyrosine but have stopped these. I must rattle!!

I'm awaiting saliva Cortisol test and DIO2 gene test result, and wondering if my body isn't using the T4 and T3 I have efficiently? Any other suggestions welcome.

Here's my results:

Oct 2017 (over dose Levo) -----------Feb 2018------------ March 2018

TSH (0.27-4.2) ------ low 0.16 ------------------1.8 ----------------------0.349

Free T4 (12-22) ------- 19.2 -----------------------20.6--------------------- 21.2

Total T4 (59 -154) -----109 ------------------------N/A---------------------- 101

Free T3 (3.10- 6.80) ----- 4.72----------------------N/A--------------------4.61

Tg AB (0 - 115) -----over 885-----------------------N/A-------------------over 929

TPO AB (0-34) -----over 58.3 -----------------------N/A------------------over 65.1

Ferritin (13-150) 44.8

Iron ( 6.6 -26) 23.63

B12 active (25.1-165) (in range Oct' ) over 180

Vitamin D . (50-200) 61.9

thanks for reading!!

[ShootingStars]

Hi Hazel, Your FT3 is too low. It appears that you are probably not converting T4 to T3. It is normal for antibodies to fluctuate. You are lucky that yours have only increased a tiny bit. Illnesses, infections, viruses, bacterias all effect your antibodies. Basically, anything that taxes your body or is stressful on your body can increase your antibodies. My TPO antibodies recently more than doubled and are now 3700. I think the cause was having to eat gluten again after being GF, so that I could get a diagnostic.

If you're not converting, try taking T3. I don't convert well either. I have to take T3 with my T4.

[Hidden in reply to ShootingStars]

Thank you, I wondered if there’s room to increase my T3 and really want to try taking a minimal amount, I left a stressful job to start my own business 18 months ago but a crappy relationship and breakup caused me to really crash and I need to get well again and start earning as I’m depleting my pension pot now 😟

[ShootingStars in reply to Hidden]

Your FT3 is much too low and is contributing to your symptoms. You aren’t converting T4 to T3 properly. Yours is not even half range at 4.6. It should be over half, if not optimal range, close to but not over 3/4. Should be at least 4.95, not higher than 5.875.

Aside from having anxiety which is not good, TSH should be quite suppressed when you have Hashimoto’s. That’s what most people don’t understand. It’s your FT3 and FT4 levels and your symptoms that matter. Your TAH was a little too low, but medication should not be adjusted based on only TSH. If you didn’t have anxiety your TSH was consistent with where other properly medicated people with Hashimoto’s find they feel best. What was your medication before and after you cut back?

Yes, you absolutely have to get a scan. That is part of thyroid health diagnostics, particularly for Hashimoto’s. Is your thyroid enlarged? Nodules are common in Hashimoto’s. They need to be scanned, measured, and sometimes biopsied to rule out cancer. Mine was. It was a very easy procedure. No cancer.

[crimple]

Haze you need to have optimal levels of your vitamins etc. Do read some of Seaside Susies posts on here. She gives excellent advice about what levels you need and how to get there! I always supplement B12 (need a level about 1000 !) and Vit D (need levelof about 110) We all learn what our optimum level is over time. I also have Hashis and am gluten free which really helped. Now trying a little bit of T3 added to levo but DO NOT attempt this until all your bloods are optimal.

[Hidden in reply to crimple]

Thank you, I'm going to give the vitamin D and selenium a chance to do their thing, and the HRT seems to be helping so fingers crossed. I think the gene tests take about a month to come back, and I'm hoping I'll be able to source T3 if needed as I know I'll not get any from the GP, also worried she'll reduce my Levothyroxine prescription if my NHS tests come back anything like my Medichecks one as they'll onky do TSH and T4

[crimple in reply to Hidden]

This is the big problem GP's etc looking only at TSH, not checking T3 and not at all at symptoms etc.

[ShootingStars in reply to Hidden]

Vitamin D won’t raise your T3 if you don’t have enough and if you’re not converting, or even if you were. Selenium won’t either. The jury is out on whether or not selenium helps lower antibodies. There simply are not enough valid studies showing it does. Regardless, I take 200 mcg daily. Don’t take more than that, you can get selenium toxicity. I’ve been taking 200 mcg daily for years. My antibodies kept increasing again anyway. They recently more than doubled to 3700. I blame that on the gluten I had to take for a test. Other culprits are any time of cold, flu, or other illness you’re trying to fight.

[ShootingStars in reply to crimple]

That’s not possible. She needs T3 in order for her bloods to become optimal. They won’t on their own. The problem is, her bloods are not normal because she doesnt have enough T3 and is not converting T4 to T3. This is exactly the kind of person who needs to supplement T3 to get rid of their hypo symptoms. Not taking T3 would be a mistake, and symptoms will persist if not multiply.

I take T3 and T4 because my bloods were very much not optimal. Both at the bottom. I started with 5 mcg T3. It helped instantly, but not nearly enough. Day 3 I added another 5. My bloods showed not converting. Added an afternoon 5mcg, totaling 3. That brought my FT3 up to over half, finally. I had to increase my T4 to get closer to optimal, both FT3 and FT4.

[ShootingStars in reply to crimple]

The optimal level depends on the lab range, not just a number.

[Hidden in reply to ShootingStars]

Many thanks Shootingstars,

I think Crimble meant getting my diminished vitamins ie my low vitamin D etc up higher, to give my thyroid hormones the best chance of working before adding T3.

However, actually getting my brain engaged it makes sense what you've said. I thought my T3 was OK'ish but the maths shows it just below the half way in range which is 4.95, and the optimal if I remember from past posts is 3/4 upwards so between - 5.785 and 6.80 on the Medichecks reports range for T3.

It seems you and others have proved the difference in health from boosting the T3 to this level, whereas looking at the range it would seem my levels are absolutely fine, is that right? Would being almost half way in range actually leave me feeling so ill? I suppose there isn't a test which shows if the T3 actually gets used efficiently within the cells, or is this part of the DIO2 problem or just a T4 to T3 conversion issue?

It's clear form my recent tests with such low TSH that it's practically switched off and I must be getting most of my T4 from my Levo dose.

So obvious next question, please could someone PM me the contact details for obtaining T3 small doses so I can try it myself?

[ShootingStars in reply to Hidden]

Hazel, you're welcome. Your D should be higher, but there's no reason worth waiting to add T3 and to keep on suffering. You don't want your T3 to be over 3/4. You might even find that slightly below that is where you feel best. You will also find that sometimes things change and you feel better at different levels, not always just one combination. You'll start to be hypo if both T4 and T3 get too high. My FT3 was once over 3/4 and I didn't feel too great. My FT4 was still just under 1/2 at the time, but I had hyper symptoms. I lost 3 pounds (I am pretty lean and muscular already), my veins were too easily visible, I had heart palpations, and my muscles felt too hot after working out.

Adding T3 was a life changer for me! Definitely, too low FT3 will give you an assortment of hypo symptoms and is probably why you feel so ill. Conversion issues come into play when something is interfering with conversion. This can be so many things. In Hashimoto's, those antibodies are often the cause. If you are fighting an illness, that can also effect things. Your numbers show that you aren't converting. If you were, your FT3 would be higher. You can do a Reverse T3 test and calculate the ratio, but it's probably not going to tell you anything much different. Do you have that gene activated? It doesn't matter if you do or if you don't have it. The fact is, you don't convert T4 to T3. The treatment is the same: take T3. You can't turn off a gene very easily, if ever, once it's activated.

If you make a separate post asking where you can obtain T3 and note the country you're in, other people will see your request and reach out to help you. I'm not in the UK.

[Hidden in reply to ShootingStars]

Many thanks, yes I will do that.

I'm waiting for results of the gene test, but increasingly see T3 conversion problems as the cause of much of the "brain fog" although mine's definitely got worse since my periods stopped in September so hormones all out of synch!!

I have a friends who's a consultant psychologist and I'm bombarding him with links about the "root cause" and how our health professionals all treat symptoms instead of possible causes. So many thyroid issues and mental health issues are the same, and hypo patients being dosed up with SSRIs and even mental health problem labels when their hormones are to blame!

[ShootingStars in reply to Hidden]

What would you do differently depending on the gene test results? I agree that many health professionals completely miss the basics on how the human body functions and what can be the cause of symptoms. They treat the symptoms, never getting to the source and fixing that. How do they miss the fact that you can't function correctly without a functioning thyroid? This is the same for animals, and yet some vets can recognize thyroid problems in animals and can treat them effectively without wasting years of quality life.

I don't necessarily agree that many thyroid issues and mental issues are the same. There can be some similarities in symptoms, not always. The root cause is completely different. I feel so sorry for all the people of the world who have been misdiagnosed with a mental disorder and put on the wrong medication, when all along they were either hypo or hyper thyroid. The tests to find out are quite basic and not expensive.

[Hidden in reply to ShootingStars]

Yes, sorry poorly worded not "So many thyroid issues and mental health issues are the same" but that thyroid malfunctions create many symptoms that are the same as mental health problems, ie anxiety, depression meaning a GP will usually prescribe SSRIs without investigating whether there's a physiological cause first, I'm sure many don't realise hypothyroidism causes so many issues not just slow metabolism.

[Hidden]

Thank you for your reply, the advice on here from members has been great, as mentioned I'm now taking selenium, D3 (with K2) and other vitamins to aid my health, but I know it'll take time to help. I think you're correct and I've been continually running on adrenalin and then burning out and crashing. Unfortunately I'm now alone (divorced and youngest child at Uni) and trying to start self employment as I can't face the :"rat race" of commuting and office stress anymore. I am going to schedule more gentle regular exercise, find a yoga class and try and get my business up and running, everything is so draining and hard when fatigue and brain fog hit. I think starting HRT a few weeks ago is helping the brain fog a bit already

I didn't know about T3 until joining this group and Tyroid UK, I'm waiting for tests to see if I have T4 to T3 conversion issues, and I'm going to take small doses of T3 regardless to see if this helps me.