Next steps?

[sa67]

I posted back in November seeking advice and wondered if anyone had advice on how to go forward. These are my test results (unmedicated):

August 2022 - TSH 0.04 (0.35-5.5); free T4 15.7 (10.5-21.0)

October 2022 - TSH 6.56 (0.35-5.5); free T4 12.2 (10.5-21.0); TPOAb >1300 (0-60)

November 2022 - (via Medichecks) TSH 6.53 (0.27-4.2); free T3 6 (3.1-6.8); free T4 15.2 (12-22); TPOAb 586.4 (0-34); TgAb 149.4 (0-115)

December 2022 - TSH 8.20 (0.35-5.5); free T4 14.5 (10.5-21.0)

I have another blood test later this week. After the December bloods the GP was insistent that everything was fine because my T4 was in range, despite the rising TSH and the fact that I've been (very) symptomatic. I've been experiencing symptoms in what I feel are very distinct phases - August to October I was highly anxious and like I was pumped on adrenaline, insomnia, heart rhythm disturbances, muscle twitches and a slight tremor, full of nervous energy but feeling weak, tingling extremities and head. In November that gave way to a phase of textbook hypo symptoms - fatigue, muscle cramps when I tried to exert myself even in a minor way, crippling stabbing headaches, feeling all dried out, brain fog, much more low mood than anxiety. Towards the end of November I felt slightly better and managed to attend some training for my work, and caught COVID. I was wiped from that for all of December, but noticed towards the middle of the month I was starting with the 'anxious' group of symptoms all over again, although on a slightly lesser scale than before. In the past week or so that's given way again to the low mood/fatigue/brain fog cluster. Because I was in the 'anxious' phase in December when I got the bloods back and that didn't really match up, the GP opted to write to the endocrinology team at the local hospital for advice. Having heard nothing back, I got an appointment with a different GP in January, and he said he'd chase up endocrinology and retest my bloods (appt this week). But he also said that the thyroid moves very slowly and it's strange that I'm having these dramatic shifts in symptom patterns, tried to suggest it was COVID (I'm sure it's not helped but this all pre-dates the infection). As I've now read up a little on Hashimoto's fluctuations I'd be inclined to think my case sounds like par for the course, and it feels like the GP is still hunting around for another cause when the answer is right in front of us.

But how does one deal with the ups and downs of Hashimoto's with regard to levothyroxine? Would medicating help even me out and avoid the big spikes? Or will levo potentially make the 'hyper'-looking phases worse/will I need to cycle off the medication and then back on again when hypo? I know if my next set of bloods come back with a raised TSH at least the NICE guidelines allow for a levothyroxine trial if GP is willing. I'm also puzzled by the T3 result in November - this was taken when I was feeling most classically 'hypo' and yet it looks high in range.

I've tested vit D, B12, folate etc. and am boosting my iron levels through diet. Vitamins were at least in the top half of ranges except D which was towards the lower end, so I've doubled my vitamin D supplements and am getting more sunlight. I've also started following the Izabella Wentz Hashimoto's Protocol, hoping to help the situation.

I'm not holding out too much hope for the NHS endocrinologist's advice, and am prepared to go to a private endocrinologist if I'm not getting anywhere - it's really debilitating and I'm maxed out on sick leave entitlement, so my job (and home) are at risk. I just need to be able to function. Any advice?

[Lalatoot]

Sa, the classic lists of clearcut hyper and hypo symptoms that you read online are misleading. The symptoms for hyper overmedicated and hypo undermedicated can be the same.For me I have to rely on blood tests to tell me if I am over or under as I can have the same symptoms for both.

Anxiety can be hyper and hypo. For hypo what your body lacks in thyroid hormones it makes up for by replacing them with adrenaline. So you can keep going but are anxious and can have panic attacks.

Sometimes when our ft4 is lowering the body prioritises t3 so ft3 can increase or look better than ft4. This may be your Nov.

Your tsh suggests and your lower ft4 results that you need an increase in levo. I personally would try a 12.5mcg inc and try splitting the dose morning and bedtime to make it gentler on the body. I would try as you are to raise vit d. Then I'd find out as much as I by reading about hashis so I could be proactive in my treatment.

Many of us have been in your shoes and have found better health so there is hope.

[Gingernut44 in reply to Lalatoot]

OP is unmedicated

[Lalatoot in reply to Gingernut44]

Thanks for pointing that out. Hadn't picked that up. In which case I be pushing to get medicated.

[sa67 in reply to Lalatoot]

Thank you, this makes sense. I think I've been inclined to interpret it as the swings between hyper and hypo that have been described in early stages of Hashi's as they've felt like such distinct phases, but it makes sense that this may not be the case, especially as I haven't caught any hyper results in any of the blood tests with the exception of that low TSH in the first test. I'm trying to push for medication now, but as I'm mostly presenting as though hyper symptom-wise, they've been reluctant to even consider it without further endo input (since the NICE guidelines say TSH above range but under 10 can be trialled with levo if symptomatic with *hypo* symptoms... and they're working from the more binary symptom lists 😓)

[Regenallotment Ambassador]

unmedicated?

Poor thing, sounds awful (and familiar)

Covid knocked me about, and every cold/flu knocked me about when unmedicated. It will get better but you have work to do.

Your TPO results confirm Hashimoto’s your two out of range TSHs confirm treatment can start.

there are some NICE guidelines somewhere (someone will post a link) that says you should be starting on 50mcg (if under 60) and testing/increasing every 6-8 weeks. I prefer 8, my GP said 12, the pill packet says 4.

You will need to be pushy and drive this. My GP was astonished when I emailed pdfs and told her how I’d like to be treated but she is now delighted for me and very good about it.

You might feel worse before you feel better (sorry just setting expectations).

You need to look at vitamins and gut health (both get into a terrible state with unmedicated Hashi’s)

B12, D, ferritin and folate need testing (MMH or Medichecks with next test maybe?)

supplement based on blood test results, no multivitamins. Post results and people will share their top tips.

🌱🤗🌱

[sa67 in reply to Regenallotment]

Thank you for your advice - I'll look to retest B12/D/folate soon, and I suspect the GP will retest ferritin this week.

[SlowDragon Administrator]

Hashimoto’s frequently starts with transient hyperthyroid results and symptoms (as your results show in August) …..before becoming increasingly hypothyroid as thyroid gland becomes more damaged

With TWO NHS blood tests with TSH over 5, symptoms and high thyroid antibodies you should be started on levothyroxine

Print this out and request starting on 50mcg levothyroxine

Starting levothyroxine - flow chart 

gps.northcentrallondonccg.n...

What are your actual vitamin results

Have you had coeliac blood test done…..or are you now already on strictly gluten free diet

[sa67 in reply to SlowDragon]

Thank you very much - I'm ready to quote the NICE guidelines on trialling levo, but my main concern is that if I am going through transient hyper phases which aren't being caught by my blood tests, will levothyroxine not make those worse?

Vitamins from Nov:

Ferritin 73 (30-150) [was then veggie - have since been hammering the red meat/liver]

Folate 39.4 (8.83-60.8) [now supplementing 400mcg]

B12 active >150 (37.5-188)

D 87 (50-250) [was then on 1000iu supplement - doubled this and getting more sun]

I'm already gluten free so missed the boat on the coeliac testing.

[SlowDragon Administrator in reply to sa67]

The transient hyperthyroid phases are when cells breakdown under autoimmune attack

Each time that happens thyroid becomes more damaged and less able to work

Autoimmune attacks reduce as levothyroxine dose increases.

Many of us with Hashimoto’s need to be on high enough dose levothyroxine to bring TSH low and under 1 to stop these rapid changes in hormone levels

[sa67 in reply to SlowDragon]

Super, thank you!

[sa67]

Very happy to report that I finally heard back from the GP, who had chased the endocrinologist, and they advised him to start me on 50mcg of levothyroxine, so I'm now in possession of the meds and can start in the morning 🤞