Symptoms worse after diagnosis and starting Levo

[StormsPass]

Firstly I am so grateful to have found this community and have trawled the forum for experiences.

I am currently having age related IVF and just had an embryo transfer cancelled due to us finding hypothyroidism.

I had a pain in the neck but other than that I was fit as a fiddle - no swelling checked by endo which led to bloodwork and diagnosis.

IVF is now cancelled until my levels are in range.

BUT having started Levo still have the neck pain, now muscle pain particularly hands and wrists and knees.

I suppose what I am asking is, is it normal to get more symptoms and feel worse when you start medication? It’s been almost 3 weeks.

Thank you

[helvella]

The conflict between the patience required for thyroid issues and the urgency re IVF you must be feeling is a nightmare.

It is usually said that it takes six to eight weeks for blood levels to stabilise after starting or adjusting a levothyroxine dose.

Though the direction can often be seen earlier - and the levels can continue to change even after that window. It is just a best guess at a reasonable time.

If you have your relevant blood test results - please post them (Include reference intervals (ranges). If you don't have them get them!

And what dose are you taking?

[StormsPass in reply to helvella]

Thank you helvella I have added my results. I am on 75 Levo and weigh 49kg.

I just didn’t expect to feel worse starting meds when I didn’t feel bad in the first place other than the neck

Next test is after 6 weeks of Levo

Results

[helvella in reply to StormsPass]

Have to say, that is higher TSH and lower FT4 than I had been expecting. We often see IVF cases with TSH only a little over the clinic's limit (e.g. 2 or 3 - something like that).

I'm very disappointed that any IVF clinic would not have checked this way before implantation time. Did they not test before now?

[StormsPass in reply to helvella]

Yes I am disappointed too it wasn’t checked. We had the fertility checks and bloods but we later realised the bloods were just STD checks not anything else.

I pushed for Thyroid check because I had neck pain and hypo runs in my family.

Fortunately we only had 1 transfer so far which failed obviously.

[HealthStarDust]

You can expect to feel worse. It’s very common. I’m one of those people.

I find it interesting that you had no symptoms based on those results. Were you taking a prenatal vitamin or any other vitamin with biotin as biotin may affect TFT results? If so, it may be worth mentioning to your health care provider.

[StormsPass in reply to HealthStarDust]

HealthStarDust thank you for replying and I am relieved to hear it’s normal to feel worse. I was taking a multivitamin at bloods time but biotin was only very low at around 16ug

(Because I didn’t read the pack and should have been taking 3 not 1 per day)

I am now taking a different one which is 250ug so having read on here it can affect results I was going to stop taking 48 hrs before next blood test

Also on higher dose folic acid due to clef lip

[HealthStarDust in reply to StormsPass]

It is thought that low doses don’t effect tests, but in the forum they usually advise to stop any biotin some days before test.

NICE guideliness have been updated recently to advise about biotin interference on tests, so hopefully in time more medical professionals will be able to advise accordingly before a test.

As for feeling worse, it’s a very common question. If it continues you may be sensitive to brand or simply on the wrong dose or may need some other treatment option. But, it’s too soon to think that yet. I’m just putting in on your radar.

Like you, I’m hoping to achieve both optimum levels and actually feel better before trying to conceive again. It’s very annoying that GPs don’t warn you in advance on the experience of Levothyroxine.

Keep posting, and asking questions. Everyone is here to help and I’m still learning too.

[StormsPass in reply to HealthStarDust]

Thank you HealthStarDust that is great advice.

I will read up on NICE too.

I hope you get your levels in range and feel better for when you are ready to TTC again 🙂

I am so grateful for everyone’s comments and advice to this hypo newbie

[HealthStarDust in reply to StormsPass]

I was lost in my darkest hour without them.

My levels are great to conceive now, but I’m not symptomless yet so just hanging on. It’s a real kick in the teeth of a diagnosis and treatment when one is trying to start the next stage of their lives.

[StormsPass in reply to HealthStarDust]

Nice to hear you are in range, I hope your symptoms sort themselves out soon.

I totally understand the kick in the teeth especially when we have a body clock.

[HealthStarDust in reply to StormsPass]

My thyroid journey started in April (mostly all in profile). Starting treatment has not been easy. I started with a full replacement dose based on weight, instead of the common low doses that people start off with and my body did not respond well to that. Since then, it’s been a case of correcting the jump start and taking a slower approach. I’ve developed a whole host of symptoms since starting treatment (some improve while new ones develop with each increase). So, since April most days in bed/sofa bound. But, I keep reminding myself that I’m nearer the end than the beginning. A shocking year for sure and so far from what I expected. Not everyone has this experience, so I am mentioning it to you so that you can manage your expectations. It’s real tough when the desire to have a baby is thrown in the mix of it all.

Like I said, keep posting, asking questions… everyone on the forum is great and have such a wealth of knowledge. It’s also a good idea to let your key vitamins tested: ferritin, vitamin d, b12 and folate. These need to be optimised to make good use of the thyroid hormone.

[StormsPass in reply to HealthStarDust]

Thank you for sharing a bit more about your journey HealthStarDust you’ve really had a terrible time but absolutely right nearer the end than the beginning.

Thank you for the vitamin check recommendation.

[greygoose]

Oh yes! Absolutely 'normal'. Happens all the time - although doctors wouldnever admit it.

According to those blood test results you were very hypos, and have Autoimmune Thyroiditis - aka Hashi's. So, you've probably been hypo for a long time without realising it. That happens, too. But, it's not just about the symptoms you see and feel, it's the hidden ones, like infertility, heart problems and mental problems. But, having been so hypo, it's going to be harder to sort out than someone who was caught early, I'm afraid. And, 75 mcg levo was probably too high a dose to start on. You might have been better on 50. But, doctors have little idea about dosing, I'm afraid.

So, you could try reducing your dose yourself down to 50, or you could just sweat it out. When did the doctor tell you to go back for a retest?

[StormsPass in reply to greygoose]

Thank you so much greygoose I am glad to hear it’s normal to feel worse.

I am surprised too - honestly felt fine.

Thank you for managing my expectations that this may take some time. I thought I would be back on the IVF train by January but perhaps not based on your experience of getting levels right.

[greygoose in reply to StormsPass]

That would probably be a little too soon, yes. Sorry to be the bearer of bad news.

[Lalatoot]

It is usual to feel worse on a starter dose. This is because the oral thyroid hormones you are taking are having an impact on the feedback loop that regulates thyroid production. This feedback loop sensing the increase in thyroid hormones reduces that produced by the thyroid. Unfortunately on a starter dose that reduction in thyroid produced hormones is often greater than the amount you are orally taking so things get worse .You need to stay on a dose for 6 to 8 weeks for the body to adapt then have bloods done . Then it is time for an increase.

[StormsPass in reply to Lalatoot]

Thank you so much Lalatoot yes my bloods are 11 December so not too long to wait

You have all certainly put my mind at rest.

As a precaution I’m seeing ENT tomorrow to check the neck pain isn’t something else as there was no swelling when endo checked

[jimh111]

Some people do feel worse initially. The body adapts to the extra hormone from the levothyroxine tablets and the thyroid can continue to get worse. It is quite usual to start people off on 100 mcg nowadays to speed up therapy. More traditional doctors start on 50 mcg so your doctor seems to have split the difference.With fertility problems all your doctors should have checked your thyroid, maybe someone did and it was OK a while ago. It's worth asking for a copy of your records.

[StormsPass in reply to jimh111]

Thank you jimh111

Yes that makes sense. My endo started me on 75.

The reason it was missed is because I opted for IVF due to my age not because of a history of infertility so hadn’t had bloods done to check for infertility.

But I did think my clinic would have done routine bloods before starting IVF which they didn’t

[Charlie-Farley]

Hi StormPass

just a quick mention that dosing is to some extent weight dependent. A very large person like me 15st and 5’8” would require considerably more thyroid hormone replacement that a dainty person of 49Kg. The dosing factor can be found in the NICE guidelines. It is 1.6ug per kilogram which equates to 10ug per stone.

So, for instance, someone who is 15 stone, the primary aim is to be symptom free (although you were asymptomatic), the aim is not for a 15 stone person to be on 150ug. The 150ug is just a guide - we are all different. 😉👍

Most people do well on just Levothyroxine so I hope for you the easy route to health. 🤗

You have been started on 75ug. If everything settles down it may be enough. The fact you were asymptomatic hints at the possibility they have caught it fairly early on. I’m off to do a bit of research something occurred to me. Back soon.

I’m back there could be a link - a trigger. There are some papers out there discussing thyroid and IVF. People with a family history can often develop hypothyroidism when pregnant or post pregnancy too I believe. Certainly an avenue to investigate.

nature.com/articles/s41598-....

[StormsPass in reply to Charlie-Farley]

Hi Charlie, thank you for explaining that doses are just a guide.

The article you found is very interesting thank you!!🙂 I will certainly keep it for the future as it may be relevant if we get a positive result through IVF.

[Charlie-Farley in reply to StormsPass]

I truly wish you the absolute best. I think they may have caught it earlier as a result of the IVF treatment. I truly believe the earlier the diagnosis the better the outcome. Just be sure to become your own health expert then you can identify the BS if/when you come across it. Just read a little at a time and regularly. I did this and was able to successfully advocate for myself to get well. I wrote my bio as a case study, covered a lot of the common misconceptions that many doctors have about treatment. If you want a read just click on my face 👍

[StormsPass in reply to Charlie-Farley]

Thank you for your advice Charlie, I will start reading for sure. I see many papers recommended on this forum.

I read your bio and glad you read you advocated for yourself and are now much improved.

I am so pleased I found this forum. I hope I can support others when I am further into my hypo & IVF journey

[HealthStarDust in reply to StormsPass]

I’m sure you will and I hope you do. Us women in the current climate of pregnancy services need all the help and knowledge we can get.

[Charlie-Farley in reply to StormsPass]

That would be wonderful StormsPass🤗

We all have different journeys and the more of us who read, study , get great lived experience advice and support from the forum, then sort ourselves out and come back to help sort out others the better things will get.

[helvella in reply to StormsPass]

To add to and emphasise what Charlie-Farley has replied, have a look at my blog page - but don't feel pushed to do so. I'm pointing out that it exists rather than that you must read it - if you know, you can choose.

helvella's calculation document and spreadsheet can be can be found by following this link:

helvella - Estimation of Levothyroxine Dosing in Adults

A discussion about the use of formulas to estimate levothyroxine dosing. Includes link to a downloadable spreadsheet which calculates several of these.

helvella.blogspot.com/p/hel...

[StormsPass in reply to helvella]

Thanks helvella I will take a look for sure

[HealthStarDust in reply to Charlie-Farley]

I have wondered if there is something about IVF treatment in itself particularly pre embryo transfer that may throw off the thyroid in women.

[Charlie-Farley in reply to HealthStarDust]

There’s papers on it. Just about framing the Google search. The fact it takes us directly to scientific papers makes it so powerful. Mind you some journals are better regarded than others. Diogenes has posted on quality of research in the past. It will sit on his profile. May require a dig - he is prolific. Might find it easier with a search the forum search bar.

[Charlie-Farley]

Searching this amazing forum’s wealth of information. HealthStarDust StormsPass

😊👍

How to do a community specific search for information

[helvella in reply to Charlie-Farley]

Despite that, it is still a pretty dumb search!

[Charlie-Farley in reply to helvella]

Now, Now, better than nothing 🤣😂🤣😂🤣

[helvella in reply to Charlie-Farley]

And better than it used to be!

[HealthStarDust in reply to Charlie-Farley]

I’m not sure about that. I find it easier to stay logged in to the forum and google search instead. Far batter than using the search bar on HU.

[HealthStarDust in reply to helvella]

Agreed! I often have to use google search.