Trying to work out which to treat first? (Subcl... - Thyroid UK

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Trying to work out which to treat first? (Subclinical hypo and female hormone issues)

melissa-b profile image

Hi everyone, hope you're all doing well!

I went to my GP for the following symptoms:

- ovarian cysts

- fatigue

- unexplained weight gain

- bloating

- rhinitis and swollen turbinates

- irregular periods/bleeding (before this, very painful/heavy periods)

- low libido

- get extremely breathless, especially if I try to exercise, since 2020

- wake up gasping for air

- insomnia (waking up at 4am every night)

- swollen / scalloped tongue

- extremely dry eyes, especially in the morning

- blurry vision

- eyelashes falling out

- dry skin and hair

- acne

- frequent migraines

- dry mouth

- dizzy, shaky, and lightheaded

- anxiety/depression

The first GP I saw said to come off the mini pill (Cerelle - been on it since 2014) as this may be causing my symptoms. Before I had the chance to come off of it, I saw another GP about my blood test results, who said to stay ON the mini pill and go on levothyroxine instead (TSH 6.3 (range 0.3 - 5), free T4 17.3 (range 12-22)). The second GP I saw left, so I went back to the first GP to ask whether I should now come off the mini pill or keep trying out levothyroxine on a higher dose (I started on 25mcg), and she said 'I don't know, it's up to you'. My TSH was 4.94.

I feel completely confused, and unsure where to go next. One of the most intrusive symptoms for me is rhinitis (a completely blocked nose, can't sleep or eat properly) and I'm on a waiting list for a very risky turbinate reduction surgery. But I saw that rhinitis came up as a side effect of both contraceptive pills and hypothyroidism, and I'd love to see if I could treat it without surgery.

I posted previously (two weeks ago) and have been working out my finances so I can afford some more in-depth blood tests - I'm going to get the Medichecks advanced thyroid test and the cortisol test (thank you for your suggestions before!).

But I feel like all my other symptoms could be related to hypothyroidism or the mini pill and I don't know what steps I should take next after the blood tests - should I come off the pill or go up on levothyroxine? I'm nervous about doing both at the same time as I won't know what's helping... I can't test female hormones as being on the mini pill makes the tests invalid. Does anyone have any advice for me, on what I should do first? I don't think I can afford to see an endocrinologist privately... I also read somewhere that contraceptive pills can cause hypothyroidism (I don't know if it's really true or not) but everything is just an absolute minefield!

44 Replies

I would suggest staying on the Levothyroxine. You have evidence that there is a problem with your thyroid, but you haven't mentioned your sex hormones having been tested and showing up as high or low. It seems the GP who suggested coming off the mini-pill was just clutching at the first straw he saw.

Another thing to look into is your nutrient levels. Several of the symptoms you've listed could be caused by low iron and/or low ferritin (iron stores) and/or low vitamin B12 and/or low folate, for example. Another common deficiency in people with thyroid disease is low vitamin D.

All these things can be tested, and if they are low they can be supplemented. Getting nutrients optimised will make a big difference to how well you feel.

melissa-b profile image
melissa-b in reply to humanbean

Thank you very much - that's very true, I haven't had sex hormones tested apart from "serum follicle stimulating hormone level, gonadotrophin level, and serum prolactin level" which came up as 'normal' (although I don't understand the test results and the reference ranges). I had also been referred to a gynaecologist who suggested coming off the pill as my symptoms seemed likely to be a side effect of Cerelle, but then she also told me to get my thyroid tested first!

I think the thyroid blood test at Medichecks will also look at my active B12, iron, vitamin D, and folate, so it'll be good to see what results I get!! Thank you so much for your reply, I really appreciate it ❤️

I agree with HB. Stay on the levo and slowly increase it. And, any sex hormone problems you have could sort themselves out. All hormones are inter-related, and if one is wonky, the others risk being so, too. Stay on the mini-pill until your thyroid labs look good. Then try coming off it if that's what you want to do. :)

melissa-b profile image
melissa-b in reply to greygoose

thank you <3

greygoose profile image
greygoose in reply to melissa-b

You're welcome. :)

Cerelle is progesterone only isn’t it? (or at least, a precursor to progesterone, without wanting to get technical). That makes it far less likely to be the thing that’s causing your thyroid issues—thyroid hormones are more affected by oestrogen than progesterone.

I love it when doctors grasp at straws… Sigh.

As others have said, get your thyroid levels sorted then see where you’re at. I don’t think any of us can guess whether that’ll fix any of your other issues but as thyroid hormones affect every single cell in your body it’s always a good place to start when there are clear signs your thyroid is struggling (and there are).

melissa-b profile image
melissa-b in reply to Jazzw

yes that's right! I was on the combined pill for a year or two (about 10+ years ago) but had to switch to the mini pill... thank you for your advice <3

SlowDragon profile image
SlowDragonAdministrator

Previous post here

healthunlocked.com/thyroidu...

Get levothyroxine dose increase to 50mcg now

Retest after 6-8 weeks

Likely to need further increase in levothyroxine after this

Unless extremely petite likely to eventually need at least 100mcg levothyroxine per day

Not a lot of point testing privately yet

pathlabs.rlbuht.nhs.uk/tft_...

Guiding Treatment with Thyroxine:

In the majority of patients 50-100 μg thyroxine can be used as the starting dose. Alterations in dose are achieved by using 25-50 μg increments and adequacy of the new dose can be confirmed by repeat measurement of TSH after 2-3 months.

The majority of patients will be clinically euthyroid with a ‘normal’ TSH and having thyroxine replacement in the range 75-150 μg/day (1.6ug/Kg on average).

The recommended approach is to titrate thyroxine therapy against the TSH concentration whilst assessing clinical well-being. The target is a serum TSH within the reference range.

……The primary target of thyroxine replacement therapy is to make the patient feel well and to achieve a serum TSH that is within the reference range. The corresponding FT4 will be within or slightly above its reference range.

The minimum period to achieve stable concentrations after a change in dose of thyroxine is two months and thyroid function tests should not normally be requested before this period has elapsed.

melissa-b profile image
melissa-b in reply to SlowDragon

thank you for linking to my previous post and for the information <3

SlowDragon profile image
SlowDragonAdministrator

Previous post 14 days ago

When were these Vitamin results from

Vit D: Total Vitamin D (serum) 53 nmol/L [> 50.0]

Folate: Serum folate level (42U5.) 12.4 ng/ml [3 - 18]

B12: Serum vitamin B12 level (XE2pf) 580 ng/L [200 - 960]

Ferritin: Serum ferritin level (XE24r) 105 ng/ml [15 - 350]

No point retesting if less than 6-8 months ago

melissa-b profile image
melissa-b in reply to SlowDragon

those were taken in March, but I had been taking multivitamins prior (and forgot to stop taking them!) so I was curious to see if the levels changed...

SeasideSusie profile image
SeasideSusieAdministrator

melissa-b

I'm going to get the Medichecks advanced thyroid test and the cortisol test (thank you for your suggestions before!).

I can't see in your previous posts if a particular cortisol test has been recommended. Please don't waste your money on a Medichecks cortisol test. Instead get one that tests both cortisol plus DHEA (DHEA is important because it helps with determining stages of adrenal fatigue, if present. Also, Medichecks tests doesn't have proper reference ranges.

Recommended tests are Regenerus or Genova Diagnostics - both are 24 hour saliva cortisol plus DHEA tests. I prefer Regenerus because they email you direct when results are available, with Genova they go to ThyroidUK who then forward them on to you when you've completed the required consent form.

Regenerus: thyroiduk.org/help-and-supp...

Genova: thyroiduk.org/help-and-supp...

You put THYROIDUK as your "practioner".

ahh I see, thank you so much!! Is Medichecks still okay to use for the thyroid blood test?

SeasideSusie profile image
SeasideSusieAdministrator in reply to melissa-b

Yes, no problem with Medichecks for blood tests 😊

SlowDragon profile image
SlowDragonAdministrator

Essential to test BOTH TPO and TG thyroid antibodies

About 90% of primary hypothyroidism is autoimmune thyroid disease also called Hashimoto’s

Technically it’s Hashimoto’s if you have a goitre

Ord’s thyroiditis if thyroid shrinks and shrivels up

Lactose intolerance and/or gluten intolerance are extremely common with autoimmune thyroid disease

Sinusitis etc often linked to lactose intolerance

pubmed.ncbi.nlm.nih.gov/221...

Previous post 4 years ago you mentioned hyper mobility Have you been diagnosed with EDS

Hyper mobility Often linked to autoimmune thyroid disease

Gluten intolerance often an issue with EDS

PCOS and autoimmune thyroid disease frequently linked

endocrineweb.com/news/thyro...

melissa-b profile image
melissa-b in reply to SlowDragon

thank you - i've only ever had TPO antibodies tested! I don't have sinusitis, unfortunately, just non-allergic rhinitis... I was diagnosed with hEDs by a rheumatologist in 2019! It's very interesting info, thank you

melissa-b profile image
melissa-b in reply to SlowDragon

I found my results from back in 2019 (when the antibodies were tested) and it was Thyroid autoantibody level 14 IU/ml [< 100.0] (TPO). Back in 2019 it was 19 IU/ml (TPO again)...It was since COVID my symptoms got a lot worse, so I think it'd be really interesting to see if it changed!

This is so weird (for me) that you present your nose problems as possibly being connected to the mini pill.

I have been having problems with swollen turbinates for the last month or so. Mine is causing what looks like a deviated septum, because one side of the nose is so out of place.

I had the contraceptive implant (progesterone only) about two months ago and think I can trace the problem starting around then. Ie. I don’t remember having this problem before then.

All I can say to the pill is that I had real problems after going on the mini pill years ago, and so stopped taking it. I have a friend whose step daughter is having the exact same (very little publicised) side effect I had now that she’s started taking it but 20 odd years on, we don’t seem further on. I’d be interested to know more about any correlation between thyroid and mini pill, another time, but I haven’t heard anything about that before.

melissa-b profile image
melissa-b in reply to Geogeor

under the NHS webpage for non-allergic rhinitis, it lists contraceptive pills and hypothyroidism as possible causes!! I feel like I'm grasping at straws a bit here, too, but it does seem like either could cause it...

Geogeor profile image
Geogeor in reply to melissa-b

I have since I last wrote been diagnosed with a strep infection of the nose. So not what I thought I had when I first responded, although the symptoms were v similar to rhinitis.

Geogeor profile image
Geogeor in reply to Geogeor

Staph, I mean

I would come off the mini pill if you are on a waiting list for risky surgery, so as to rule involvement of the mini pill out. Give yourself a short time on levothyroxine and if you don’t start to see fast improvements, taper off your mini pill is my totally unqualified advice.

I don’t see many remarks here about rhinitis and thyroid - yours is the first I remember. But you can search here for old messages and see if anyone else related theirs to thyroid problems.

melissa-b profile image
melissa-b in reply to Geogeor

thank you - i think i'll try that! I didn't see much about it either - but the NHS webpage for non allergic rhinitis lists hypothyroidism as a cause... I also read this article which said rhinitis symptoms were resolved once the patients' TSH was under 4! pubmed.ncbi.nlm.nih.gov/206...

radd profile image
radd in reply to melissa-b

Melissa-b & Geogeor,

Both your contraceptive pill or/and hypothyroidism can be causes of or contributing to your rhinitis as hormonal changes are a well documented cause. Most hypo symptoms lists include post nasal drip, no matter whether it's founded by allergic/non-allergic rhinitis, nasal polyps or other.

Allergic rhinitis patients have increased levels of allergen specific IgE in their nasal mucosa, and when these inflammatory mediators aren’t raised they call it non-allergic rhinitis, but it’s still some sort of immune reaction because the mucus/post nasal drip results from nasal membrane inflammation. The very fact that certain antihistamines & spray corticosteroids are effective treatment speaks for itself.

And like all immune responses it can effect or be influenced by sex hormones, although it is usually elevated oestrogen that can drive autoimmunity. I know you are on a progesterone only pill (that ought to be calming) but have you had oestrogen levels checked? Elevated oestrogen is a very common cause of Ovarian Cysts.

Also, both thyroid antibodies TPOAb & TGAb should be tested. I know you have been diagnosed with non-allergic but there are so many inflammatory markers and in allergic rhinitis cytokines IL-6 & TNFα are released which are also prevalent in Hashi so if thyroid antibodies are high one condition can perpetuate the other.

I had constant NAR for years and used a nasal saline solution (Neti pot) which helped a little, and everything cleared up when I became optimally medicated on thyroid hormone meds & reduced thyroid antibodies. I don't think you are subclinical, but clearly hypothyroid with a raised TSH & every symptom going. If your FT3 had been tested four years ago when you first posted with a TSH of 10, I feel sure it would have been extremely low.

I agree with Geogeor re coming off the pill because staying on could be muddying the waters. Also, if I were you I wouldn’t have the nose op but concentrate on thyroid issues, especially ensuring FT3 levels reach optimal. SeaSideSusie has previously explained the damaging effects of remaining on a starter dose of Levo. I would also look towards calming your immune response through Vit D, fish oils, maybe adopting a gluten free diet. Many say going dairy free helps nasal/mucus problems.

I replied to another poster this morning re histamine which you may find useful as these issues are all tied in together.

healthunlocked.com/thyroidu....

Here is a link to 'Ignored Adult Primary Hypothyroidism Presenting Chiefly With Persistent Ovarian Cysts' ncbi.nlm.nih.gov/pmc/articl...

.

When doctors are uncooperative regarding FT3 testing, members use private labs.

thyroiduk.org/help-and-supp...

Geogeor profile image
Geogeor in reply to radd

Radd, I’m in awe. Thank you.

I’m going off to read about allergic rhinitis now.

To complicate what I said earlier, in the same recent period when I started having a Mirena coil, I also started taking T3 for the first extended period.

So I understand what it is to have two new co-factors and not know - Poirot style - which one is causative of the new problem, if the problem is a side effect.

I’m going (I am very lucky to have the benefit of a corporate health scheme) to see an ENT person in the first instance to check whether the problem is swollen turbinates / allergic rhinitis / something more sinister (there are sometimes tumours in the nose and it’s a hard area to look inside and check out, unless you know how) / a deviated septum for another reason. I’m also going to get my TSH levels checked.

Let us know how you get on, Melissa. My TSH has been knocking around the 2 mark for a very long time, even on 150 mcg levothyroxine (when I am borderline underweight) so I’d be more surprised to find that I had suddenly developed nasal problems as a hypo symptom than as a progesterone symptom.

And re: oestrogen, when my oestrogen was tested earlier this year, my levels were (yes) extremely high. I don’t know what one can do about that or whether progesterone dampens it down. More reading.

Thanks everyone.

melissa-b profile image
melissa-b in reply to Geogeor

Geogeor - let me know how you get on at the ENT, too! I'm very interested if you have swollen turbinates, too. Hope things get sorted for you soon!

melissa-b profile image
melissa-b in reply to radd

thank you so so much - this is very helpful!! I went back to my GP and they're going to test both antibodies and cortisol, but they can't test T3 so I'm still considering a private blood test.

The GP now said she thinks I need to take the 50mcg of levothyroxine and all my symptoms could be hypothyroidism, so (after the heatwave is over, just in case it makes me feel worse!) I'm going to go up on the dose. She recommends I stay on the pill for the time being, so I'll do that for now (but might still come off if nothing changes - definitely before any surgery).

I did have a blood test to check for allergies, and it showed none, but I'm also not entirely convinced (although antihistamines don't help my enlarged turbinates at all!).

I did have tests for PCOS as the GP (I didn't realise! LH and FSH) and they were clear, which is good.

I can't have oestrogen tested since I'm on the mini pill... Everything's still quite confusing to me but I think I'll try treating my thyroid first!

radd profile image
radd in reply to melissa-b

Great you're having a Levo raise.

I’m not suggesting you have PCOS because you haven't mentioned any symptoms but be aware testing for PCOS whilst taking a birth control pill will distraught the results.

In PCSO FSH & LH will raise in an effort to encourage a dominant follicle when ovaries aren't responding well, whereas the pill tricks the body into thinking it's pregnant and FSH & LH will behave accordingly.

You definitely need FT3 tested whether it's a GP or private test. If you post results complete with ranges (numbers in brackets) members will comment.

I have allergic rhinitis too so it could be a connection, I would try to figure out what your sensitive too aswell ie could be sulphites/ parabans etc etc

verywellhealth.com/allergic...

I would stay on both as you might struggle if you come off the pill and have bad PMS as I do but I have Pcos too. So I need to stay on some form of contraception or you could try hormonal cream

You need to up the levo or try a thyroid supplement if you don't want to use levo as it's only just raising and get your TSH under at least 2 to see if your symptoms resolve

melissa-b profile image
melissa-b in reply to Merlio18

thank you! unfortunately, it's non-allergic rhinitis which makes it harder to fix :( thank you for your advice <3

I feel for you. I am certainly no doctor but that sounds like Polycystic Ovary Syndrome (OCOS)? I am afraid that there isn't a lot of treatment other than adding female hormones if you can tolerate them but there are a few drugs that might help. It will depend on your age. What causes the worst symptoms are high Testosterone (acne, hair loss, cysts, period problems, infertility, low moods, and insulin resistance (weight gain and diabetes). A few of your symptoms cross over with thyroid problems and vitamin loss. Yes, agree need more T4 as well. You need a referral to an Endocrinologist who should be able to deal with both these conditions. You mention a gynecologist later, was that for the cysts?

bookish profile image
bookish in reply to annnsandell

Micki Rose's PCOS ebook is available free now I understand, just in case it is any use to you/yours purehealthshop.ecwid.com/He...

It could well be! I saw the gynaecologist as I was bleeding for about 4-5 months without stopping, and having very severe pain. It accumulated in a sudden extreme pain one night, and then eased off (before I could see the gynae) and they believe it was due to cysts... I don't think it's likely I'll get referred to an endocrinologist as the GP I'm seeing (who said it was up to me) said my TSH is perfect now!

So what about back to GP say you suspect PCSO and that you need more T4 (TSH 6.3 (range 0.3 - 5 is not normal), take notes including all your symptoms. Read up on PCSO by googling (NHS will do) and look at Treating PCOS With the Contraceptive Pill: The Complete Guide. All very common and should not be beyond a GP (we live in hope). Your mini pill should be helping with your periods etc. but not everyone can tolerate it. Have a look at Micki Rose's book above. Research and relax. Good luck

SlowDragon profile image
SlowDragonAdministrator in reply to annnsandell

PCOS and Hashimoto’s often linked

PCOS likely to improve once thyroid levels are better

Also lots of diet options for improving PCOS

Good luck! By the way I was on the pill for over 30 years and had an over active thyroid! It was not related to the contraceptive use as I came off the pill several years before I was diagnosed!

So sorry to hear of your problems & as someone who suffers from the same type of respiratory problems, occasionally exacerbated by sinus infections, you have my sympathy! My GP prescribed Flixonase Nasal Spray ( Fluticasone propionate) for me, I use 2 squirts ( technical term 😂) up each nostril every morning & although it’s no miracle cure, it has helped me immensely!! Hope this helps & you get some relief soon!

Also - it's really silly but I'm very nervous to go up on the levothyroxine as in the past few weeks, my anxiety has spiked and become almost unbearable (it's like my body is extremely anxious/panicky/hyper all the time even when my brain isn't, if that makes sense). I've been barely sleeping, whereas beforehand I couldn't stop sleeping (before the levothyroxine). Can anxiety like this be caused by hypothyroidism, or is it possible the 25mcg has made me hyper?!

SlowDragon profile image
SlowDragonAdministrator in reply to melissa-b

my anxiety has spiked and become almost unbearable (it's like my body is extremely anxious/panicky/hyper all the time even when my brain isn't, if that makes sense).

Anxiety is common HYPOTHYROID symptom and will improve as dose is increased

Important to maintain optimal vitamin levels

Gluten free/dairy free diet often helps or is essential

Starting on and staying on too small a dose levothyroxine, your even shorter on thyroid hormones than before.

Levothyroxine doesn’t top up failing thyroid, it replaces it. That’s why it’s so important to be on adequate dose

If worried about increasing to 50mcg …..cut a 25mcg tablet in half and add to 25mcg to make 37.5mcg ……try this for 2-6 weeks before increasing to 50mcg

Retest thyroid levels after 6-8 weeks on 50mcg levothyroxine

Likely to need further increases in levothyroxine over coming months

Eventually likely to be on approx 1.6mcg per kilogram of your weight per day…..unless very petite that’s likely at least 100mcg per day

Breathlessness (air hunger) common hypothyroid symptom

melissa-b profile image
melissa-b in reply to SlowDragon

Thank you - I didn't realise it was so bad to be on the starter dose! My GP wants me to go onto the 50mcg so I'll be doing that soon. Thank you so much for your help and advice <3

SlowDragon profile image
SlowDragonAdministrator in reply to melissa-b

Standard starter dose of levothyroxine is 50mcg

Dose is increased slowly upwards in 25mcg steps until TSH is ALWAYS Below 2

Most people when adequately treated will have Ft3 at least 50% through range, frequently Ft4 will be a little higher…..and TSH often below 1

Guidelines on eventual dose levothyroxine required….is approx 1.6mcg levothyroxine per kilo of your weight per day

Some people need less, some need more

So unless very petite likely to eventually need to be on at least 100mcg levothyroxine per day

Levothyroxine doesn’t top up failing thyroid…..it replaces it

"...almost unbearable (it's like my body is extremely anxious/panicky/hyper all the time even when my brain isn't,"

Are you doing any intensive exercise? Or pushing yourself physically too much? Asking because I had that feeling when I did too much while being ill (b12, vitamin d, thyroid issues and gynaecological issues - chicken and the three eggs syndrome).

I called it stress in the body., As it was hard to explain. I would always feel this dry pull in the mouth at the same time.

But as someone has already noted quite a few of these symptoms can be due to b12 deficiency/pernicious anemia (including functional b12 deficiency where serum numbers are not low)

Also I had your breathlessness, exercise changes & waking up gasping for air. It was in the end for me due to multinodular goitre (size and placement of two of them was the issue - nodules can be no issue, just monitoring) & low vitamin d.

Hope you find your issue at hand right now & I am sorry for what you have been going through, it can be so stressful to figure out multiple issues.

melissa-b profile image
melissa-b in reply to Litatamon

I think it happens when I've pushed myself a lot (but usually just by having a busy/long day) and it always comes on in the evenings! I think I'll still go for a private blood test to get my active B12 checked (and T3, etc)... Thank you so much for your kind words, and I hope you're feeling better <3

Hi everyone 💛 I haven’t gone up on thyroxine yet as I wanted a full thyroid panel blood test - I finally ordered one from Medichecks and found a GP surgery nearby who would take my blood for £30… and then I got COVID 😭 I’m on day 9 of COVID now and still testing positive, it’s been quite rough. My question is: does anyone know how long I should wait before my blood test? Will having COVID again effect my results? I don’t want to wait too long as I’d like to go up on my dose as soon as I’m feeling okay again 🤞🏻

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