Levothyroxine and ovulation, plus general knowl... - Thyroid UK

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Levothyroxine and ovulation, plus general knowledge on auto immunes

Caliendria profile image
15 Replies

Hi. New to group. 6years ago diagnosed retinal vasculitis, unknown auto immune and Fibro myalgia. I have always suspected SLE but Ana neg. A while ago bloods showed RO positive so rheumatology believe Sjorgens and although lupus still suspected Ana still neg. 2 weeks ago discovered hyperthyroidism so they now also suspect Hashimotos so 2 possibly 3auto immunes. I even more strongly believe I will get Ana post at some point and lupus diagnosis eventually especially knowing that both Sjorgens and Hashimotos have close links with SLE.. And lupus often leads to hashimotos. Now to my real query.... I also have adenomyosis and endometriosis...it stopped me ovulating 10years ago so myself and hubby do not have a child (I had my son at 17 with severe pre eclampsia,28weeks and 1 lb 9)...after many operations to remove endo I started ovulation a couple of years ago.. We started ttc again and have got pregnant 7times but lost each before 7weeks.. I have charted since we started and ovulate cycle day12/13, with lh surge (hormone to release egg) on cycle day11/12..started levothyroxine just over 2 weeks ago and currently cycle day17 with no ovulation, but signs suggested surge was cycle day 11as normal.... Dr said the losses could be as result of the thyroid as hyperthyroidism can cause pregnancy loss and also prevent implant so levothyroxine may help get pregnant and stay pregnant but never mentioned it could delay or stop ovulation.... I don't know if having surge but ovulation being delayed will make egg non viable.... Will I get period early or will that not come? We probably should stop trying to conceive with all the risks and issues but I am so desperate to have a baby with my husband and soul mate and thought this medication could be the answer......

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Caliendria
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Marz profile image
Marz

Sorry - but on reading your post I was unable to understand so many of the abbreviations. You have had a torrid journey - but it appears to me you may well have been suffering with Hashimotos from the very beginning. Do you have any test results you could share - with ranges. Members can then be more helpful :-)

You need the TSH to be low in range ...

Caliendria profile image
Caliendria in reply toMarz

My thyroid was absolutely normal when first diagnosed auto immune and at least one more a year or 2 later so it wasn't hashimotos from start... Also retinal vasculitis, cotton wool spots, dry eyes, photosensitivity etc are not a hashimoto thing. The symptoms I have had from the start have all been very much a check list for conditions such as Lupus, but because my Ana is negative everytime tested they cannot give a clinical diagnosis of Lupus SLE.. 2% of lupus patients do present with negative Ana... Nearer beginning of this year I demanded all the tests again as I know that the fibro diagnosis is pretty weak, and I know my symptoms are linked for the most part, (Dr said they would do all the auto immune tests but she said it was a waste of money) however, finally I got a result.... Ro positive with high titres... This is an indication of one of 3conditions...Sjorgens, Lupus SLE and lymphoma... Sjorgens and Lupus literally cover all my symptoms and often go hand in hand... So I still believe eventually Ana will be positive and I will have a primary and secondary, Sjorgens and Lupus.. The thyroid issue is something that has developed in last 3-4 months and on further research hashimotos is another auto immune that often is seen in lupus patients so to me it seems too much of a coincidence to have 2auto immune conditions (sjogren's and hashimotos) that are clearly linked with lupus to not in fact have lupus as the underlying condition... But time will tell there... I have not seen the levels of the thyroid test but Dr said that with my existing Sjorgens and the levels in test suggested Hashimotos rather than graves. My rhuematologist has kind of left me in the lurch since my ro positive test months ago... I just got a letter to say that was the result of test so sjogren's, Lupus can't be diagnosed until Ana is positive and if I get pregnant I need to be monitored for congenital heart block! Not being seen again till July.. No more explanation. I went to GP due to last few mo this the fatigue being so severe and resting heart rate became quite high and was having palpitations... Ecg at GPS took 45minutes to get working and it had subsided by then but Dr heard ectopic beats. They tested the usual fatigue culprits, diabetes, b12, cut d, thyroid to rule them out... All normal apart from thyroid... Someone else suggested the tests I need so will hope to get these done and will try to find out specifically what levels were to shed some light.

Marz profile image
Marz in reply toCaliendria

Am not sure what you mean when you say your thyroid was absolutely normal - normal is an opinion and not a result. Do you have copies of all your results with ranges ? You are legally entitled to have them. So important to monitor your own health and to check what may have been missed.

When I receive my results with ranges I add my own notes - doses of T4/T3 - supplements etc. as a reminder.

Do you have gut issues ?

Caliendria profile image
Caliendria in reply toMarz

I have ibs from teenage years...mainly constipation unless I eat rich foods...then the opposite... I have spells of issues where I have to take daily lactilose due to going days without going until I am in pain and discomfort, but not had any bouts for many months.... Re results... I have never been given figures, and always used to rely on the fact Dr's know what they are talking about but over the years I have been realising this is not true... The only blood tests which I know the figures for is my esr which since I had the rush to hospital 6years ago with what was diagnosed as retinal vasculitis but at first suspected giant cell arteritis and aneurism, which was 128.high dose steroids and 48hrs later it dropped to 92 and kept dropping, the lowest it has been since is 26 but often is around 60, especially when having flairs.. Cpr is also always highlighted yellow but I don't know figures.

RedApple profile image
RedAppleAdministrator

Welcome to the forum Caliendria.

By using so many abbreviations that many members may not be familiar with, you are limiting the chances of people offering the help and support you're needing.

Please consider editing your post to include full words/names instead.

Help on how to edit a post is here support.healthunlocked.com/...

Caliendria profile image
Caliendria in reply toRedApple

I am not sure which abbreviations you mean...ttc is trying to conceive and CD is cycle day and mcs is miscarriages, so I suppose before we started trying to get pregnant we would not have known these abbreviations either! but otherwise I have only used the medical abbreviations such as Ana (blood test) and SLE(lupus) which anyone having experience with these tests or conditions would know....

Angel_of_the_North profile image
Angel_of_the_North in reply toCaliendria

Well, that's a help as I'd never heard of any of those. Those abbreviations might be common on a forum concerned with pregnancy, but this is a thyroid forum. You might well have had autoimmune thyroid disease from the start - you'd only know if you'd has TPO and TG antibodies tested and looked at the results - as autoimmune diseases often come in groups. Miscarriage is often symptom of hypothyroidism.

SlowDragon profile image
SlowDragonAdministrator

Sorry to hear you have had such dreadful time

When TTC or for successful pregnancy TSH must be under 2.5

For full Thyroid evaluation you need TSH, FT4, TT4, FT3 plus TPO and TG thyroid antibodies.

Plus very important to test vitamin D, folate, ferritin and B12

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

All thyroid tests should ideally be done as early as possible in morning and fasting. This gives highest TSH and most consistent results. (Patient to patient tip, GP will be unaware)

If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

About 90% of all hypothyroidism in Uk is due to Hashimoto's. Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten. So it's important to get TPO and TG thyroid antibodies tested at least once .

Specific TTC and Pregnancy guidelines

gp-update.co.uk/files/docs/...

thyroiduk.org.uk/tuk/guidel...

Caliendria profile image
Caliendria in reply toSlowDragon

Thank you for all that info... They found the thyroid issue when doing the standard, thyroid, diabetes, b12 tests to ascertain if the increase in fatigue (I get flairs of fatigue over the years hand in hand with flairs of the muscle/joint pains, retinal vasculitis etc but never as bad as it has been since January and in particular last 3months where I am sleeping 12 hours a day) was due to my existing conditions or not.. B12 and diabetes was all perfectly normal.. They are testing again in another 2weeks to see how the levothyroxine is affecting levels so I will ask what is exactly being tested based on the info you have given.

Angel_of_the_North profile image
Angel_of_the_North in reply toCaliendria

B12 needs to be over 500, was it?

Caliendria profile image
Caliendria in reply toAngel_of_the_North

Not a clue as it was phone conversation and no numbers were given. I will phone surgery Monday and ask all the values for each test..

Angel_of_the_North profile image
Angel_of_the_North in reply toCaliendria

Get a print out for accuracy and make sure the ranges are included, as tests are meaningless without them. It's your legal right to see your results and they can no longer charge for them.

Caliendria profile image
Caliendria

To my knowledge no other genetic issues related to auto immune but then so much wasn't known or understood 20years ago, who knows? But nothing immediately obvious. As far as not trying I turned 40in March which was going to be cut off as I am such high risk of pre eclampsia again now older, ontop of everything else, but we are not ready to give up until I have to go back on immune suppressants which I feel may be soon due to severity and frequency of flairs..we are not 'scheduling' sex, and I am only temping after period up to ovulation to just confirm it has happened and so I know when to expect next period but we are not using contraception until I do go back to immune suppressants... We hope that in a couple of months we can try seriously for 3months and then if it has happened, fantastic but if it hasn't then try to come to terms with not having our own baby which we did 10years ago when fertility Dr's told me I wasn't ovulating due to endometriosis and they could not do anything for me.

Caliendria profile image
Caliendria

Update, thank you all for trying to help advise... I am going to get my results for the last 2rounds of blood tests Feb ish time for the auto immune and a few weeks ago for the thyroid, diabetes, vitamins) to ascertain exactly what was tested and levels and then I will post on this thread and if anyone can spare time to advise if in fact when Dr said normal it is normal etc... The last blood tests I had for thyroid etc before that was around 4/5years ago so I do not think Dr's reception will go back that far when I have had so many tests and check ups every 4weeks for years and see 3different departments at 3month intervals and sometimes more regularly though I will ask about that to ascertain if I have had the start of a thyroid issue back all those years ago... It is hard as some symptoms I have overlap Lupus, Sjorgens, Hashimoto and even Fibro myalgia so it is possible that I have a couple, 3or even all, though I have always felt what they say is down to fibro is to do somehow with my body and immune system attacking my various systems.

Caliendria profile image
Caliendria

Hello all... So have my printouts...

Tsh 13mu/L....(0.3-5.5)

Serum free t4 14pmol/L....(10-22)

B12 649ng/L...190-660)

Serum ferritin - 108ug/L...(244-400)

Folate 10.8ug/L.. (2.1-26.8)

Esr 34mm (0.0-9.0)

Now I do take pregnCare vitamins although did not take until after blood test... Don't know if that would have affected Folate /b12... I assume not as body doesn't hold these? Grateful for any insights x

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