I'm really hoping someone may be able to offer a bit of guidance or advice as i really don't know which way to turn.
Since i was a young teenager, i've always had really dry, brittle and frizzy hair, an inability to lose weight (despite excessive exercise and cutting calories) and an erratic menstrual cycle (varying between 35 and 45 day cycles). My GP at the time didn't seem to know what was wrong and told me to go back when i wanted children.
A few years later, in 2019, i noticed that i had lost a lot of hair and had also lost a lot of weight. My GP ran bloods and discovered i was hyperthyroid with a TSH of <0.01, T4 of 21 and T3 of 8.1. My TPO was 15. I spoke to an endocrinologist who believed this to be thyroiditis and monitored my bloods over the next few months. My TSH was monitored and over the course of the next 3 years would bounce around a lot.
TSH - September 2019 (<0.01), March 2020 (2.79), April 2021 (4.94), November 2021 (1.32), August 2022 (4.10), May 2023 (3.6) and then October 2023 (0.8)
I continued to have the same symptoms with my hair and weight as i did throughout my adolescence. Although monitoring my bloods, my GP obviously could not medically intervene as my TSH was not elevated enough for medication, despite the persistence of problems.
I researched the Keto diet for months before deciding that this may be the solution to my weight difficulties. I started keto last august, lost several stone and felt wonderful. I truly thought i'd fixed the problem and that maybe i'd just had insulin resistance all along. In October 2023, my TSH was 0.8 (i didn't have t4 or t3 tested).
One month later, i noticed my hair had begun to fall out in chunks. I couldn't believe that this was happening again after spending several years trying to regrow it following the initial thyroiditis. My hair is still shedding today - 6 months later. My periods then also became erratic and much lighter.
In February, i began retaining water and gained a stone rapidly (within a couple of weeks). Nothing i could do would shift the water and i began feeling bloated/heavy all of the time. After managing to lose weight doing keto, after years of excessive exercise, seeing the scale rise so rapidly every day and feeling so powerless in stopping it, was so heartbreaking.
My latest symptoms have been significant swelling of the eyelids upon waking as well as my skin, particularly my face, having a yellow/orange tint which is mainly present also upon waking.
I ended keto in March as i feared that it was the diet that had triggered this hypothyroidism. My doctor ran my TSH (5.65), T4 (11) and T3 (3.5) in March too, however i imagine my readings are worse now, as my symptoms have progressed. My doctor has advised repeating the bloods in June and if there continues to have been no improvement, commencing on 25mg of thyroxine.
I really don't know what to do anymore or who to talk to about this. Is medication appropriate when i've fluctuated so much over the last few years? I feel like this is a big decision to start medication since its lifelong and i don't want to jump into something i may not need?
Is this another thyroiditis episode triggered by the stressor of keto or has keto unearthed an underlying persistent thyroid problem? Is the real issue a t4 to t3 conversion issue and thats why i'm experiencing the symptoms of hypo?
Any advice or guidance on next steps would be greatly appreciated!
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BeautyintheStruggle
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My doctor ran my TSH (5.65), T4 (11) and T3 (3.5) in March too, however i imagine my readings are worse now, as my symptoms have progressed. My doctor has advised repeating the bloods in June and if there continues to have been no improvement, commencing on 25mg of thyroxine.
With TSH over 5
Bloods should be retested 6-8 weeks after first test
Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine
For full Thyroid evaluation you need TSH, FT4 and FT3 tested
Also both TPO and TG thyroid antibodies tested at least once to see if your hypothyroidism is autoimmune
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
Have you ever had thyroid antibodies tested
Low iron/ferritin strongly linked to hairloss
Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease
About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high TPO and/or high TG thyroid antibodies
Autoimmune thyroid disease with goitre is Hashimoto’s
Autoimmune thyroid disease without goitre is Ord’s thyroiditis.
Both are autoimmune and generally called Hashimoto’s.
Significant minority of Hashimoto’s patients only have high TG antibodies (thyroglobulin)
20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis
In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
Levo doesn’t top up failing thyroid…..it replaces it
So although we usually start on low dose, almost everyone will end up eventually on a full replacement dose
Guidelines of dose Levo by weight
approx how much do you weigh in kilo
Even if we frequently start on only 50mcg, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or near full replacement dose
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.
Some people need a bit less than guidelines, some a bit more
Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.
If symptoms of hypothyroidism persist despite normalisation of TSH, the dose of levothyroxine can be titrated further to place the TSH in the lower part of the reference range or even slightly below (i.e., TSH: 0.1–2.0 mU/L), but avoiding TSH < 0.1 mU/L. Use of alternate day dosing of different levothyroxine strengths may be needed to achieve this (e.g., 100 mcg for 4 days; 125 mcg for 3 days weekly).
basically yes , it would be sensible to start on levothyroxine if TSH is still over range in July,
As for your concern about it being a life long decision ,,,, well yes it does usually tend to be , BUT, it's important to note that taking thyroxine turns your own thyroid production down / off while you are taking it , but if you stop taking it ,your thyroid will go back to making however much T4/T3 it's capable of doing ... (it may take it a month or so for it to do this , because you have to wait for the TSh to become high enough to signal the thyroid to try harder again) . But taking levothyroxine doesn't turn your thyroid off forever, so if taking it turns out to be the wrong decision ,or you go a bit hyper again , you can stop / reduce Levo dose as needed.
Regarding the starting dose , it would be better if you can persuade the GP to start on 50mcg which is the usual starting point for everyone except the elderly, or those with heart problems , or those who have become extremely hypo and are frail . otherwise starting at 25mcg usually just prolongs the agony of getting to the correct dose because you have to wait at least 6 wks to see the effect of a dose before adjusting it .
Can't say much more at the mo, as i've just tired myself out in the garden, so my brain won't co-operate. but hopefully you'll get more answers explaining all the things i can't articulate right now.
I really doubt that all this had anything to do with the keto diet - not even the weight-loss. It sounds to me as if you had a Hashi's 'hyper' swing, where the dying cells of the thyroid gland deposit their stock of hormone in the blood, causing Free levels to rise sharply - and temporarily. Now, you've gone back to being hypo again, as you have been for a long time, from what you say. Your TSH has mainly been to high to be euthyroid. It's jumped about, yes, but that's what happens with thyroid.
I feel like this is a big decision to start medication since its lifelong and i don't want to jump into something i may not need?
It's not 'medication' in the normal sense of the word. It is thyroid hormone replacement, replacing what your thyroid can no-longer make enough of. Levo doesn't cure anything, and it's life-long because you're always going to need it. With Hashi's, things are not going to get better, they're going to get worse. Your immune system is slowly destroying your thyroid. So, the sooner you start on thyroid hormone replacement, the less damage that will be done to the rest of your body from being hypo. Every single cell in your body needs thyroid hormone to function correctly, and you cannot live without it. So, if I were you, I'd start on levo now - but not until you've persuaded your doctor to prescribe 50 mcg as a starter dose, because starting on too low a dose can make symptoms worse.
Is the real issue a t4 to t3 conversion issue and thats why i'm experiencing the symptoms of hypo?
Impossible to tell at this stage of the game how well you convert. To find that out, you have to be on levo only long enough for your TSH to come down to 1, and your FT4 to be at least 50% through the range. Then, you get FT4 and FT3 tested at the same time and compare them.
I expect you will turn out to be a poor converter, most Hashi's people are. But that will be far from your only problem. So, just take it one step at a time and see where the next step gets you. Next step? Start levo.
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