Can anyone please advise me for my mum, how long does it take to become normal again after beginning Levothyroxine ?
A little bit of background, she had undiagnosed hypo for almost 3 years. She’s begun Levothyroxine therapy beginning of November. At the moment she alternates 50 with 75 each day and her numbers are now great. I don’t remember them but I know we checked and they really are good. Symptoms were complete exhaustion , wasn’t able to gain OR lose weight , hair loss, acne, awful period cycles with painful boobs.
Her number before diagnosis were tsh 11 , ft4 12 (lowest normal range number) and ft3 was 6 (high of normal)
She still hasn’t lost any weight and seems to suffer SEVERE exhaustion after exercise. When does it start to kick please guys? Please, only positive comments xx thank you all xx
(Weight gain was 10lbs)
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Isobelfred
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We will write these down thank you. Would you say 3 months is too little time for someone who’s been hypo for so long to be back to normal (as normal as can be with hypothyroidism)
If I’m honest hearing that it could take months is good because that means she still has time to improve. After going back to gp she told her your numbers are fine , look elsewhere for problems
Are you in the U.K.? If so, go and ask for a print off of the thyroid blood test results. “Numbers are great” doesn’t always mean what you might think it means. It often just means “numbers in range” which is a very different thing and that there could be considerable room for improvement.
FT4 is 60% through range, FT3 is 50% through range. There is room for FT4 to go up to around 19.5ish and FT3 to go up to about 6ish and TSH could go lower.
Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine (the magazine for doctors)
"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.
In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance.
But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.
This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l).*"
*He recently confirmed, during a public meeting, that this applies to Free T3 as well as Total T3.
You can obtain a copy of the article by emailing Dionne at tukadmin@thyroiduk.org print it and highlight question 6 to show your doctor if there is any problem with raising dose if necessary.
Only improvement she’s seen is less hair loss, less tired expression on her face because she looked wiped, she doesn’t nap in the day anymore and her acne went in a week x
Other thing she had was a lot of sugar craving! Couldn’t get by without sugar. And it didn’t matter whether she dieted or over ate, she couldn’t gain or lose weight whatsoever. And painful knees which she still has. Trying to remember as much as I can!
Blood sugar issues are massive with low thyroid hormone. There are two different kinds and many have a mixture of both : hypoglycemia (or too little sugar in the blood) or/and insulin resistance (too much sugar in the blood).
When your blood sugar levels drop below normal, your adrenal glands respond by secreting cortisol which tells the liver to make more glucose, bringing blood sugar levels back to normal. Hypoglycemia is a condition in which there is not enough cortisol to raise blood sugar into the normal range.
Cortisol may become low after compensating for three years worth of low thyroid hormone.
There’s still a little room there in the numbers for an small increase in levothyroxine which might make a difference.
But often when we’ve been undiagnosed for years, our other nutritional levels drop - iron, B12, Vit D, folate being the most common. It’s because when we’re hypothyroid our guts don’t work as well - constipation, we don’t absorb nutrients as well. So it would be well worth asking for those nutrient levels to be tested to see if supplementation would help.
I’ll do that thank you. Can I just add that her doctor watched her TSH reach 11 before he prescribed her. Even then, in that day he said we could wait till it gets to 15 to be certain.
I’m afraid that’s pretty typical. Doctors aren’t trained properly in thyroid matters - they get about half an hour on it during 6 years of training and even then are told it’s all about simply getting the numbers back into range with levothyroxine. It isn’t - as you’ve realised - always quite that simple.
But many people do brilliantly on levothyroxine - don’t let the stories here worry you too much as they’re the exception rather than the rule - and it just takes time for bodies to get back to normal after years of being deprived of what is an essential hormone.
Thank you. It’s dreadful how people suffer it makes me very sad reading some of the posts on here. Good job there’s you guys there to help thanks so much for this info so far it changes a lot..
Yes. All because she’s not over weight. But she looks drained. I went in with her myself on one of the many many times she visited over the years and he was so dismissive. I seemed like he didn’t want her on Levothyroxine I just don’t know why! Her hair loss was visible and she looks like she’s wasting . Just not over weight
Is his name Jakob or Wilhelm Grimm by any chance, because that's the best fairy tale I've read for a while. The only place he's got 15 from, is his imagination, Grrr.
He’s from Nottingham in the East Midlands. Very moody arrogant man. He actually owns the practice , which is terrifying. Bothers me a lot that someone else could be going through this. It affects people’s lives ! Christmas and birthdays and holidays have been missed, it’s affected her confidence and spirit so much.
Wait until it gets to 15? The GP is a sadist! Particularly as your mum had a lot of symptoms. Does he ask someone with diabetes if they want to wait until they go into a coma?
You’re going to need to keep an eye on this idiot, especially if your mum still doesn’t feel well in the future, or if symptoms return and if TSH goes high in the ‘range’ or below range.
Did he test antibodies to see if your mum has hashis? If not he needs to. And don’t let him fob you off by saying it doesn’t matter - it’s not the same as just having an underactive thyroid and can be more unstable.
The info on this site and the people on here will help you - it is the most fantastically supportive community and has enabled me to understand and manage my condition.
Look after your mum - we love out mums. I miss mine every day. Good luck! 🤸🏿♀️
Made me cry reading the last part I’m so very sorry !!!!
She does have the antibodies. We suspect she’s always had this condition looking back over the years. Unfortunately she won’t let me come to the gp with her again because she knows I’ll tell him what I think which won’t be pretty for anyone. But she does take a pen and paper and write it all down, to his amusement. (She’s 54)
She’s always been a strong very healthy woman , we knew something wasn’t right. He would say “well you look fine to me “. Just because she still brushed her hair and put her makeup on! My advice would be to go in without makeup on and look your worst to get help x
I do think 3 months is too short a time, 6-9 months may be more appropriate.
I've posted below where levels might be ideal, but it is very individual. However, do look into the vitamins and minerals, it's essential for them to be optimal.
Plus TPO and TG thyroid antibodies to see if cause is autoimmune thyroid disease
If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).
About 90% of all hypothyroidism in Uk is due to Hashimoto's.
Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten. So it's important to get TPO and TG thyroid antibodies tested at least once .
Dose of Levothyroxine has to be increased slowly. Getting vitamins tested and supplement to get levels optimal is essential too. Then TSH rises a bit and dose of Levothyroxine can be increased further
NICE guidelines saying how to initiate and increase. Note that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. Do not take Levothyroxine dose in the 24 hours prior to test, delay and take immediately after blood draw. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
As she has raised antibodies low vitamins are especially common
Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels. Low vitamin levels affect Thyroid hormone working
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten.
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
Ideally ask GP for coeliac blood test first or buy online postal kit under £20 (just to rule coeliac out.) If coeliac test is positive she needs to remain on high gluten diet until endoscopy organised via GP. Max 6 week wait
If test is negative, can immediately try strictly gluten free diet. Stick on it 3-6 months, if it helps stick with it. If no noticeable improvement then reintroduce gluten and see if symptoms get worse
Hi Isobelfred. I’m sorry, we can’t name people on the public forum. I’ve reported your message to have it removed. Or you can hit the ‘more’ button next to reply to edit or delete. To reply to a private message, there is a box under the message to type in then hit send. Hope this is okay. 🤸🏿♀️
It depends on what other damage has occurred as a result of possible long term low thyroid hormone.
If your Mother is receiving enough thyroid hormone replacement and her iron and nutrient levels are optimal, she could look at improving adrenal health.
Adrenal glands can suffer when thyroid hormone is low as they compensate, first running high and then dropping as supplies become depleted but it is these adrenal gland hormones (mainly cortisol) that are required for good thyroid hormone synthesis.
There are numerous reasons why cortisol issues might prevent thyroid hormone replacement meds from working well from inhibiting T4-T3 conversion to causing thyroid hormone receptor insensitivity.
Also, weight gain can be a result from the slowing down of the metabolism due to low thyroid hormone but also a result of elevated cortisol as fat cells around the middle are sensitive to this hormone for storing energy.
Her symptoms sound awful. I hope she feels better soon.
Do you mean that the weight gain could be from something else rather than the low thyroid ? Such as high cortisol? Really interesting she’s has been incredibly stressed
Yes, cortisol is a stress hormone and low thyroid hormone is incredibly stressful to the body. Cortisol kicks in whether the stress be physical, emotional, psychological, environmental or illness.
Progesterone is the precursor to cortisol, so when cortisol levels increase, progesterone levels decrease. Oestrogen and progesterone should balance each other so when progesterone is low, "oestrogen dominance" sets in encouraging elevated levels of the protein carrier TBG (thyroid binding globulin). This can then bind too much thyroid hormone making it inactive ..... hence hypothyroid symptoms even when bloods are "normal".
Considering your Mothers ... { awful period cycles with painful boobs } ... , fairly good thyroid hormone levels but severe hypothyroid symptoms, it might be worth asking her GP to test sex hormones, etc. but I would also say there is still room for a Levothyroxine dose increase.
Thank you radd we will look into new info this properly. In your experience , would you say the time you spent hypothyroid is roughly the same amount of time you’ll spend repairing on Levothyroxine before you’re back to normal? I’ve heard this a few times but wondering if you all would agree.
I lady also commented that 6-9 months is a more appropriate time to wait to see a difference. I hope this is the case really, she won’t mind the wait so long as better times are ahead !
Interesting about the cortisol stress response , but it’s hard to know what’s causing it? Emotional or physical stress. She also quit smoking and found she struggled to find an alternative stress release.
I do have her cortisol blood test result but I don’t know what the measure is after it. We got cortisol 313 and prolactin 194. Of those are any use at all
Thanks so much
Rad , also responding to your previous post about blood sugar , she suffers with this very badly. If she goes too like without food she will get the shakes
Absolutely not ! ! ! .. I would say every case is individual and it depends on how you approach a recovery path, as sometimes listening to doctors is a death wish.
Many members have experienced cortisol issues due to thyroid hormone problems as the adrenal glands always compensate. If results apply to a 9am serum cortisol test, your Mothers confirm her adrenal glands are working but only represent a snapshot moment as cortisol levels are influenced by a circadian rhythm and are therefore variable depending on the time of day.
Also, a serum prolactin test should be repeated as is variable and influenced by many things.
Every case is different and given that smoking has such a detrimental effect on the whole endocrine system, it may be prudent to assume negative effects may last longer than hoped for.
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