Feeling very puffy on levo and HRT: Hi there. I... - Thyroid UK

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Feeling very puffy on levo and HRT

Localhero profile image
11 Replies

Hi there. I was diagnosed 8 weeks ago as having borderline hypothyroidism and prescribed Levothyroxine, 50ug. I also take transdermal oestrogen (2 pumps daily) and oral progesterone and have done without problems for two years. Since beginning this combination, my energy has improved considerably. However, my whole body feels very puffy. My abdomen is often swollen, as are my legs and boobs. Any idea what's going on and how to sort it? I don't weigh myself but am sure I've put weight on, which seems odd. Also, my clothes are tight.

My most recent blood tests results (for thyroid) were: Free T4 - 11.7 pmol/l (12 - 22); free T3 of 3.7 pmol/l (3.1 - 6.8) and a TSH of 3.8 mu/l (<4.2).

I'm due another set of blood tests this coming week and will see my endocrinologist again shortly too but any ideas in the meantime would be welcome as I feel so uncomfortable.

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Localhero
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SeasideSusie profile image
SeasideSusieRemembering

Localhero

What brand of Levo have you been prescribed? Some people have adverse reactions to one brand or another and need to try a different brand. Teva brand is the one we hear most about for adverse reactions.

My most recent blood tests results (for thyroid) were: Free T4 - 11.7 pmol/l (12 - 22); free T3 of 3.7 pmol/l (3.1 - 6.8) and a TSH of 3.8 mu/l (<4.2).

Were these results after you started Levo? If so, how long had you been taking it? These results show that you need an increase in dose.

When doing thyroid tests, we advise:

* Book the first appointment of the morning, or with private tests at home no later than 9am. This is because TSH is highest early morning and lowers throughout the day. If we are looking for a diagnosis of hypothyroidism, or looking for an increase in dose or to avoid a reduction then we need TSH to be as high as possible.

* Fast overnight - have your evening meal/supper as normal the night before but delay breakfast on the day of the test and drink water only until after the blood draw. Eating may lower TSH, caffeine containing drinks affect TSH.

* If taking thyroid hormone replacement, leave off Levo for 24 hours before blood draw, if taking NDT or T3 then leave that off for 8-12 hours. Take your thyroid meds after the blood draw. Taking your dose too close to the blood draw will give false high results, leaving any longer gap will give false low results.

* If you take Biotin or a B Complex containing Biotin (B7), leave this off for 7 days before any blood test. This is because if Biotin is used in the testing procedure it will give false results (Medichecks definitely use Biotin, they have confirmed this and the amount of time to leave the supplement off).

These are patient to patient tips which we don't discuss with doctors or phlebotomists.

Localhero profile image
Localhero in reply to SeasideSusie

Thank you SeasideSusie ! These were my starting blood test results - so before I began taking the Levo. The brand I have is Actavis. And, thanks for the inside scoop on blood tests.

radd profile image
radd

Localhero

Welcome to our forum.

It takes up to 6 weeks to initially saturate the body with Levothyroxine and the goal is to restore a euthyroid status, usually by achieving a TSH level just above/below 1.0. You are still under medicated as your FT4 is below range, FT3 low in range and TSH too high at 3.8mu/l.

People with thyroid issues often have iron/vitamin deficiencies caused by low stomach acid. Ask your doctor to test Vit B12, folate, Vitamins D & ferritin and post results complete with ranges (numbers in brackets) for members to comment. Remember a doctor's "normal' is not always optimal for best thyroid function.

Water weight gain, puffiness and bloating could be due to several things such as : 1) Excess oestrogen (imbalanced by progesterone), 2) Low thyroid hormone causing swelling (edema), or a slowing of the digestive tract, or a decrease in the kidneys blood filtering function leading to salt and water retention.

Localhero profile image
Localhero in reply to radd

Thanks for this radd . Can Levothyroxine interfere with bio-identical HRT, do you know?

radd profile image
radd in reply to Localhero

Localhero,

Yes but it is also possible to medicate both along side each other. I do and bio-identical is definitely the preferred form.

There are two main pitfalls; TBG (thyroid binding globulin) is a transporter protein carrying your thyroid hormone in the blood stream to receptors all over your body. An increase in oestrogen can increase TBG levels that may then bind too much thyroid hormone making it inactive. Remember thyroid hormone has to be cleaved from TBG to become “free-fraction” (FT4 & FT3) before it can activate cellular receptors.

Also, prolonged cortisol elevations (caused by long term low thyroid hormone) can eventually congest the liver and impair its ability in clearing excess oestrogens from the blood.

Both of these issues are good to be aware of but take months/years to happen so not applicable to your immediate situation. Let's hope for a puffiness improvement as your thyroid hormones optimise and other hormones balance.

Sorry, didn't realise bloods were taken before Levo. Interesting that you were prescribed Levo with a TSH in range. (They don’t always regard the low level frees). Be good to see the next set. Have you had health problems for a long while ?

Localhero profile image
Localhero in reply to radd

Thanks so much for this. Yes, I’ve struggled with exhaustion for about 20 years and my GPs have always diagnosed it as either “nothing” or “maybe chronic fatigue”. But I felt so bad late last year that I asked the advice of a lovely private gynaecologist I’ve seen for ages and she referred me to an endocrinologist. My energy is somewhat better. But I definitely still feel out of whack, if that makes sense!

radd profile image
radd in reply to Localhero

Localhero,

Your results evidence your lack of thyroid hormones and a low TSH level.

In a nutshell, the hypothalamus (a pea-sized gland in the brain) monitors the levels of thyroid hormone in the body & secretes TRH (thyrotropin releasing hormone), which acts on the anterior pituitary gland to produce thyrotropin, which is also known as TSH (thyroid stimulating hormone).

So when thyroid hormones are low the TSH level's should escalate through trying to encourage more and it is these results that GP's generally diagnosis hypothyroidism on. Your results would point to a problem with your pituitary or hypothalamus and doctors don't usually recognise this. Therefore, it is good you have sort further help.

The treatment is the same, ie Levothyroxine, but because you have been ill for so long there could be many other conditions caused by long term low thyroid hormone. The first things to correct would be optimising nutrients. Have you had iron, VitB12, folate and VitD tested recently ? These are commonly low due to long term low thyroid hormone discouraging adequate amounts of gastric acid that is required for a healthy gut and good absorption.

Do you have gut issues ?

Also, although your issue points to secondary hypo, have you had thyroid antibodies TPOAb & TGAb measured ? Hashimotos is very common and can cause immune damage if not managed.

Localhero profile image
Localhero in reply to radd

Yes, I do have gut issues and have had for the same length of time. I have had antibodies tested. TPOAb was <9 (0-34) and TGAb was <10 (0-115).

radd profile image
radd in reply to Localhero

Localhero,

No thyroid antibodies then ... lucky you. 🙂

Addressing gut issues will enable thyroid meds to work better and increase iron/nutrient absorption. See link below on low gastric acid in hypothyroidism.

.

stopthethyroidmadness.com/s...

Jeppy profile image
Jeppy

Hello

I know,this was three months ago but would love to know please how you have gone on as I too take levo and have started bio identical hormones and my weight has crept up plus I feel very low and anxious in the night especially

Localhero profile image
Localhero in reply to Jeppy

Sorry it has taken me days to reply - I’ve only just seen your message. I’m honestly not much further forward than I was in June. I’ve seen my endocrinologist twice now since then. He put my Levothyroxine up to 75g in June and my thyroid numbers are much better. However the weight gain, puffiness etc persists. So, I did a review with my gynaecologist last week. She did some blood tests and I’m still waiting to hear about them. She wasn’t honestly very helpful or even sympathetic about my symptoms. Didn’t actually seem to think there was much wrong with them 🙄. So galling! So I guess I’ll have to wait and see. On the plus side, I’ve no menopause symptoms like flushing, vaginal dryness etc. And I do generally sleep better, though it took some months of doing the HRT before that was the case. But I also can still wake in the night and feel very anxious. The night just past is a case in point. I’m not sure I’m being much help here. However it’s good to know I’m not alone!

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