Sorry for the confusing headline, I wasn't really sure how to put it!
So basically about 3 months ago I think an endocrinologist finally decided to put me on levothyroxine due to having ruled out cortisol issues and finding that my TSH was normal (1.8) but T4 fluctuates between lowish (12) and normal (16) but my T3 is consistently low (3.1 or 3.7 ref range 3 - 6.8).
So about 2 months ago I started on a very low dose of levothyroxine, only 25mcgs and very gradually actually started to feel a little better in terms of energy. At first I felt like my heart was pounding quite alot but that did settle. I could only start on a low dose due to my heart condition.
I have been experiencing EXTREMELY severe perimenopause symptoms aswell which were getting so bad that I was self harming and becoming very concerned for my safety so the doctors decided to put me back on HRT.
The plan was to have transdermal gel oestrogen and the mirena coil because I did struggle with nausea on the progesterone last time I did HRT.
But I have to have the coil fitted in hospital due to a heart condition and there is a very long waiting list to be seen so I started the oestrogen part of the HRT about 3 weeks ago and I also increased my sertraline dose slightly.
On 1.5 pumps of oestrogen a day, levo of 25mcgs and sertraline of 75mgs, I've finally started feeling tentatively a little better. Energy levels increased a little, heart fairly settled and MUCH better mentally.
But 😬
I have to have some form of progesterone so whilst I am waiting for the coil appointment they have given me generic progesterone capsules and I started them last Friday so a week ago and all this week I have been suffering from SEVERE sleepiness. Such severe sleepiness that it has been a struggle each day to just keep my eyes open and do anything other than sleep. I am feeling anxious and not well when I try to do anything and all my body really wants to do is just sleep.
But worse than that, on Monday I had a run of irregular heart rhythm out of the blue, basically ectopic heart beats.
Then this evening I have had another run of these ectopic/ skipped beats which lasted a good five minutes and my heart has been "Skippy" ever since.
It does seem that it must be the progesterone that is triggering my heart and the extreme sleepiness because they were both fine before starting it. Plus my ectopic beats are normally worse when my progesterone levels are naturally higher in the run up to my period.
Now I've been reading up online a little and apparently there is a strong connection / interaction between progesterone and the thyroid and it can really interfere with levo and thyroid levels but I don't really understand how and I'm wondering if anyone can explain it to me?
Could the progesterone have caused my thyroid to go a bit whacky and that's what's triggered my ectopics to worsen or is it more likely to be simply the progesterone that my body just isn't liking?
Should the levo be increased? I am very reluctant to stop the levo as it seems to have helped.
Should I stop the progesterone though it will put me at risk of endometrial lining cancers.
I'm asking questions because my GPs are unhelpful and borderline defensively rude and completely un keen to help me after I put in a GMC complaint earlier in the year (yes I am considering changing GPs but my health history is too complex at the moment to pass onto someone else) so I will get zero help or input from them.
I will ring them tomorrow for advice but I suspect they will say either keep taking the progesterone and live with the arrhythmia (difficult mentally for me) or stop the HRT completely which is an absolute no go for me as I was getting dangerously suicidal off the HRT and I also suspect they will say they do not have a clue about how the levothyroxine and thyroid fits into all this.
Sorry for the long post and I'm not really sure what my question is 😬, I'm guessing I'm just looking for any information as to how all these hormones fit together because I'm having to be my own doctor to navigate through all this 😬
I really do not want to increase my arrhythmia because it already destroys my life as it is so I'm a bit gutted tonight that my heart is doing this but not overall surprising knowing that both progesterone and levothyroxine are heart irritants.
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Lucy___
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I don't know anything about heart issues so I can't comment on that.
Are you taking progesterone before bed, that helps with sleepiness. The sleepiness wore off after a couple weeks for me and progesterone gives me a better night's sleep.
If the progesterone capsules bother you, there is transdermal progesterone available on the nhs. I have not heard of amyone who got it, but it's an option to explore.
I've not heard of a GP that will prescribe estrogen only if you have a uterus due to the cancer risk in following years.
I'd suggest using the progesterone vaginally every other night, this is something Menopause Clinics suggest though it is off license, it gets what you need where you need it without effecting the rest of your system 🤗
Progesterone used to make me punch drunk when I first started using it so did a few months vaginally to allow my body to adjust and then switched to orally as it does make for a good nights sleep.
Yes, an increase in Levo is going to be needed as 25mcg isn't a full replacement dose
Hey Lucy, sorry to hear of your troubles. Can only comment based on my own experience but hopefully it might help a bit. I was already on Levo for 10 years plus before starting HRT. For me, the HRT seemed to increase my T4 levels and found it hard to get the balance between feeling "ok" and not getting symptoms of too much Levo.I use oestrogen gel in the morning and was told to take progesterone tablets at night for 14 days of cycle (as still menstruating). Progesterone makes me feel unwell and I could never use it as contraception. On the Louise Newson Menopause Dr website/ Balance App, there is a lot of info about progesterone and also a good webinar about menopause and the thyroid...would recommend checking it out.
If you have an issue with progesterone, you can use it vaginally and several friends have tried this successfully too. When our surgery had a menopause nurse, she used the Louise Newson website for advice and factsheets and had done their training. Progesterone is not licenced to be used this way, but that doesn't mean it's not safe. I'm not a medical expert, but just sharing my personal experience. Louise Newson is/was an NHS Dr.
If you use Oestrogen, you MUST use progesterone to avoid thickening of the womb lining which is apparently very risky.
Levothyroxine doesn’t “top up” your own thyroid output, it replaces it
Almost everyone on levothyroxine will eventually be on full replacement dose.
Being on too low a dose levothyroxine can cause irregular or ectopic heart beats
Standard STARTER dose Levo is 50mcg
Get thyroid and vitamin levels tested
Likely ready for increase to 50mcg
Likely to need further increases over coming months
Retest again 2-3 months after each increase in dose
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
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)
NHS only tests TG antibodies if TPO are high
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)
Essential to test vitamin D, folate, ferritin and B12
Lower vitamin levels more common as we get older
For good conversion of Ft4 (levothyroxine) to Ft3 (active hormone) we must maintain GOOD vitamin levels
What vitamin supplements are you taking
Also VERY important to test TSH, Ft4 and Ft3 together
What is reason for your hypothyroidism
Autoimmune?
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before 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
If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test
If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal
Monitor My Health (NHS private test service) offer thyroid and vitamin testing, plus cholesterol and HBA1C for £65
Important to always test Ft4 and Ft3, but especially in your case where TSH is unresponsive/sluggish
Aiming to maintain Ft4 (Levo) at least 60-70% through range, testing correctly with last dose Levo 24 hours before test
What vitamin supplements are you taking
HRT often changes how much Levo we need…..
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 somewhere near full replacement dose (typically 1.6mcg levothyroxine per kilo of your weight per day)
Adults usually start with a dose between 50 micrograms and 100 micrograms taken once a day. This may be increased gradually over a few weeks to between 100 micrograms and 200 micrograms taken once a day.
Some people need a bit less than guidelines, some a bit more
TSH should be under 2 as an absolute maximum when on levothyroxine
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).
It took me several types/ doses of progesterone to find one that worked for me. When I was initially advised to take 2x night for a 2 week on/ off cycle, this triggered my anxiety massively (palpitations, tremor etc). As TiggerMe and others have advised, vaginal insertion works for some who cannot tolerate oral progesterone, so do read up on this method.
It is well-known that oestrogen affects the amount of thyroid binding globulin in your blood.
Basically, the more oestrogen, the more TBG. (One of the significant reasons Total thyroid hormone tests are madness.)
If your TBG increases, that can at least temporarily slightly reduce the free T4. If your TBG decreases, that can at least temporarily slightly increase your free T4. You'd expect a permanent change to end up resolving after some time. But if the oestrogen level keeps varying, the balance of bound/free T4 also varies.
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