Feeling worse with raised T4/T3 levels

[WestElf]

Hello,

I have an appointment with my thyroid specialist in a couple of weeks. I've just had my latest blood test results back and I am feeling very confused and hoping for some help ahead of the appointment so that I am better informed. It will only be a 15 minute appointment so not much time to ask questions. I'd be grateful for any insight - I've been reading the forum daily for the last few months, have also read Paul Robinson's book and Broda Barnes' book so I'm starting to slowly understand the complexities of thyroid conditions but when you're faced with your own blood results and symptoms it is very hard to assess them objectively.

All info is in my Bio, but just to say I've been on increased dose of 75mcg Levothyroxine for the last 8 weeks. Anxiety peaked in weeks 2-4 after the increase and came down a little after that but it is still very bad. Now that I have my blood test results back and can see that my T4 is high in the range I'm wondering if that might be why? Should my levo dose be lowered? My doctor's plan was to get thyroid hormones optimal and then start to improve sex hormones. But I'm feeling worse with the raised thyroid hormone levels and I'm wondering if that was the right treatment plan?

In terms of symptoms I have improvement in constipation, irritability and I have started sweating a little bit (after years of not sweating). My other symptoms remain the same though and I also now have complete lack of appetite (although I do feel hungry) along with aversions to certain foods/smells (like when I was pregnant).

My results are here (and also in my Bio):

TSH 0.038 (range 0.27-4.20mlU/L)

Free T4 21 (range 12.0-22.0pmol/L)

Free T3 5.3 (range 3.1-6.8pmol/L)

Anti-Thyroglobulin Abs 16.60 (range 0-115kIU/L)

Anti-Thyroidperoxidase abs 13.3 (0-34kIU/L)

Vitamin D 103 (range 50-250nmol/L)

Ferritin 69 (range 30-207 ug/L)

Serum Folate 13.80 (range >7nmol/L)

Total B12 425 (range 145-569pmol/L)

Estradiol 390 (range 222-854pmol/L) - day 28 of 28 day cycle

Testosterone 0.78 (range 0.29-1.67nmol/L)

Free testosterone 0.0061 (range 0.003-0.033nmol/L)

I'm sorry if this is a long post and to take up time but I'm feeling quite alone in all of this and would be grateful for help.

[Dahliasanddaisies]

Hey westelf, I'm sorry you're still feeling unwell. One of the more knowledgeable members will comment I'm sure. I assume you took your blood test before 9am and before your levo?

You say in your bio you did initially feel better on HRT, did you feel any better when you started on levo? Maybe you need to increase your estrogen again? I know 100 is the max on the NHS but Newson will prescribe more if needed. Maybe the testosterone will help too?

[WestElf in reply to Dahliasanddaisies]

Thank you for your kindness. Yes, the blood was drawn at 9am more than 24 hours after last dose of levo.

I did feel very well for a couple of weeks after starting HRT. But it was not sustained. I even went up to a very high dose (2x 100mcg patches plus 3 pumps gel) but it didn’t help so eventually reduced back down. Nowadays I feel well for, at most, a day or two at the same point in my cycle (around day 8 or day 17). My thyroid doctor says that the thyroid hormones need to be optimised before increasing estrogen and adding testosterone. So yes, I think you’re right, that those two need to be increased next. I’m just worried that the 75mcg levo is too much for me…

I did feel better after starting levothyroxine but the improvement quickly went away. This seems to be a pattern for me with hormones…

[Dahliasanddaisies in reply to WestElf]

Gosh, sounds so frustrating!! I'm sorry 😞

[RockyPath]

Hi WestElf,

I see you didn't get many replies, and none of the gurus jumped in with input.

I will offer some questions from my recent experience.

Are you on any other medications? Anything new? Anything you've been on for several years?

You mentioned sertraline in your bio, so, for example, it would be good to know the pharmacokinetics of that drug. Using favorite search engine, "pharmacokinetics of sertraline" for example, returns

ncbi.nlm.nih.gov/pmc/articl...

The benefit to this kind of analysis is it discusses some of the variables that influence how a drug impacts the bodily systems -- i.e., taken before food, with food, and genetic variables in liver enzymes. There are polymorphisms that are well known (but ignored by prescribers) that will produce undesirable side effects. Typically, the prescriber prescribes another drug to deal with the side effects, rather than considering there was a mistake in the first place.

Typically general clinical articles in drug databases only skim over the adverse impacts of drugs, and lists of drug adverse impacts are written in a way to minimize the recognition of effects that may appear only after a long period of time on the drug.

I refer to my own recent experience with a calcium channel blocker (CCB) prescribed for essential hypertension three years ago. It seemed to be doing its thing properly, and nobody ever questioned if I really had essential hypertension. Two and a half years into taking the drug, I developed a cough, fatigue, loss of appetite, weight loss, extra ventricular heartbeat. After a bazillion tests, including a six-hour glucagon challenge test requested by the endocrinologist, and CT scans from head to top of thighs, it was determined that I am extremely healthy. Everyone was flummoxed. Then I stumbled upon the CCB as cause of the symptoms.

I'm now living happily ever after, without essential hypertension.

The dose of 75 mcg levo is not too much, based on the rule of thumb that uses body weight, of which your endocrinologist is aware. Here's hoping it's something outside your current scan that is easily resolved.

[WestElf in reply to RockyPath]

Thank you for taking the time to write such a detailed response. You have certainly given me something to think about, for now but also into the future as I age and potentially take/am offered more medication.

I don’t take anything else currently other than what is in my Bio - I weaned off sertraline in early 2022. But I’m thinking that maybe when my specialist adds in testosterone and more estrogen those hormones are likely going to upset/change things - at least for a while as my body adjusts.

All very interesting. Thank you.

[RockyPath in reply to WestElf]

If the only thing you are taking is Levo, then I would ask about the genetic testing you had to determine your conversion status. Have any of your labs included rT3?

When I was on 75 mcg levo, my rT3 ranged between 15 and 29 (clinical range 8-22) and my TSH was suppressed. I felt rotten until I was off levo and on NDT.

I rummaged by hand through my raw genetic data and examined all of the DIO genes and some polymorphisms had no published research.

[WestElf in reply to RockyPath]

I’ve not had rt3 tested - might ask specialist about that.

I found my own DIO gene status via my Ancestry raw data. What do you mean by ‘some polymorphisms had no published research’?

[Regenallotment Ambassador]

Based on personal experience, I’d say it’s too soon to change anything, try for 12 weeks, hold your nerve and see how you feel.

You could work on your ferritin though.

My anxiety is related to B12 levels which look high when tested but actually aren’t getting to where they are needed and drop fast if I don’t supplement.

🌱

WestElf edited yes B12 ✅ was a typo 🙄

[WestElf in reply to Regenallotment]

Thank you. ‘Hold your nerve’ - has never felt more apt for me. I will indeed hold my nerve and hang in there - I guess it’s too early to be panicking but anxiety makes you do that unfortunately!

I have been trying with my ferritin and it has gone up a small bit since my last couple of tests - so I will persist with that. Difficult for me as some of my symptoms are around eating difficulties so not always possible to eat what I want. But you have motivated me to keep trying so thank you for mentioning it.

Did you mean B12 rather than B2?

[WestElf in reply to Regenallotment]

Thanks for the edit!

[WestElf]

Posting an update for the people who saved my post (and other future readers who may be desperately searching for answers like me).

I continue to feel awful, severe anxiety with regular panic attacks now (I am 9.5 weeks in to the 75mcg dose). I am really struggling. However, as mentioned above and in my Bio I do have some improvements in some very long term symptoms - they are hard to notice as I feel so awful, but they are there.

I had my appointment with my thyroid specialist this morning and she was pleased that some changes are happening and said that obviously my body needed the levothyroxine. She was very happy with my bloods as they all look great (apart from free testosterone which is low). She was happy with the T4 level of 21 but agreed to reduce my dose slightly to see if it will help with the anxiety. Although she didn't want to reduce it too much as she said that would affect my T3 which is now good. So I will now be taking 75mcg on weekdays and 50mcg on weekends.

She has also increased my estrogen and wants me to add in testosterone in 6 weeks (after the estrogen has had time to settle). She said that testosterone has many benefits and is a really important part of hormone replacement therapy.

She reminded me that hormones take a very long time to work, it is a slow process and we have to be patient. She also reassured me that if the levothyroxine continues to be awful for me then there are further options I can try.

I hope this is helpful.