Worried I could be hyper. Don't want to stop t3. - Thyroid UK

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Worried I could be hyper. Don't want to stop t3.

Salphy profile image
26 Replies

Hi have bloods next week so just looking for some reassurance really. Not really a question just to talk as I don't really have anyone who really understands.

I started t3 7 weeks ago. Bought my own but discussed with endo before taking it and on his advice didn't reduce my t4 but added in 6.25 t3.

I don't want to jinx it or speak to soon but I already feel like a changed person. Work have commented I seem brighter. My fiance has said my eyes seem to have life in them again. I've lost 8lb since starting with very little change to my diet (already gluten free. Probably eaten more salads instead of soup or gf sandwiches just because of the heat but nothing massive or unusual for me.)

I am SO relieved the weight is coming off. I absolutely need to lose it as of this morning my BMI is 30. (Small victory that I'm no longer classed as obese which I think only people here will understand) But just a bit worried it could be because I'm hyper. My blood pressure is low 105/57. HR 61. Both pretty normal for me. When hypo I was borderline high but before all this started I was always on the low side.

I've heard good rate of weight loss in diets is 2lb per week. So I've averaged just under that. But I haven't been dieting.

I also have PCOS and before t3 would have periods that lasted 2-3 weeks (very slow to start)

Since starting t3 I've had 2 7 day bleeds. First one around my usual time (cycle day 31). Second one was early (cycle day 18) it was very light and I thought it was just spotting. I needed to use sanitary products for 2 days of it.

I'm now on cycle day 18 again but no sign of it. I'm hoping it's just my body sorting itself out.

I've had periods lasting for 2-3 weeks for atleast 18 months on t4 only so I don't think it can be a coincidence? Before t4 they were 2-3 months apart.

All this even though I was only "subclinical." My bloods have never shown clinical need for t3.

Surely all these improvements can't be due to anything else though?

Before t3 I increased my t4 to 112.5 from 100 and felt more hypo. Came back down and felt better but not great.

I increased my t3 dose to 12.5 (2 doses split) first couple of days felt fantastic. Could tell when I was in the office after I'd taken it at 3pm within half hour I was singing along to my music again. But then after a few days I felt more hypo. Reduced back down and felt better.

Before starting t3 my bloods were

Tsh 0.055 (0.27-4.2)

T4 22.1 (12-22)

T3 5.75 (3.1-6.8)

I'm praying my bloods next week dont come back too bad. I think my next step will be to reduce my t4 and add a PM t3 dose.

Given my blood pressure and HR is it possible to still be hyper? I have had a few times i felt a bit jittery but it lasted 10 mins - 1hr Max and put it down to having not eaten. I have an essential tremor which worsens with activity anyway.

Fingers crossed I've found something that works for me and nearly hit my thyroid's sweet spot 🙂

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Salphy
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26 Replies
Salphy profile image
Salphy

Forgot to add that my endo wanted me to go try metformin slow release for PCOS to regulate my periods.

I had the normal one and it made me constipated and bloated. (I know others normally get the opposite then try the slow release one to stop it.) I flat out refused to have the laxatives my private endo offered because I'm not getting into the cycle of treating side effects of one drug with another.

So I'm reluctant to try the slow release one as won't it slow things down further?

But more reluctant because I've had the two 7 day bleeds on T3. I don't want to take something I don't need :-/

AnnaSo profile image
AnnaSo in reply toSalphy

Metformin is known to aid weight loss, didn’t your doctor tell you that?

Salphy profile image
Salphy in reply toAnnaSo

Yes but it didn't for me unfortunately. It made me bloated and constipated so I put weight on. I stopped taking it after 6 weeks. Haven't had the courage to start the slow release one yet as I don't want the same symptoms and feel like i might not need it since starting t3 x

AnnaSo profile image
AnnaSo in reply toSalphy

Right, though you started it the same time as T3. I am on slow release and no problems :) the standard one also wrecks my belly.

Salphy profile image
Salphy in reply toAnnaSo

I started it a few months before the t3. When you say wrecks your belly does it make you constipated or the opposite? If you don't mind saying :)

I don't think my endo believed me that it made me constipated lol x

AnnaSo profile image
AnnaSo in reply toSalphy

Bloated, but the type of bloated that doesn’t go away from conventional methods, terrible. I’m already constipated from low T3 so can’t say if Met is making it any worse or better :)

Angel_of_the_North profile image
Angel_of_the_North in reply toSalphy

Don't forget to increase B12 if you take metformin.

Salphy profile image
Salphy in reply toAngel_of_the_North

I have injections. They won't let me have any more I've tried x

Suzyjul profile image
Suzyjul in reply toSalphy

Metformin is a diabetes drug and shouldn’t have anything to do with your period.

bantam12 profile image
bantam12 in reply toSuzyjul

It can be prescribed for pcos.

Judithdalston profile image
Judithdalston

Your before T3 bloods looked very good with FT3 in excellent part of range...so not sure what the T3 will have done to your results. Is T3 known to help PCOS? Adding 25 mcg T3 to my levothyroxin sent T4 down 10 points, TSH reduced by nearly -X10, and oddly my FT3 went down. Have you been on the fixed dose ( 12.5 mcg T3 and 100 levothyroxin) for full 6 weeks before blood tests? Got rather confused re your post when you said you felt hypo raising T4 dose- do you mean hyper?

Salphy profile image
Salphy in reply toJudithdalston

They looked good but I felt rubbish :( was lucky to find an endo who supported me with it.

I've not heard anything about T3 and PCOS.

No sorry before t3 I was on 100mcg for 6 weeks.

Since t3 i've been having t3 6.25 mcg and t4 100mg for 7 weeks. Apart from about a week in between where I was having 12.5 and 100.

It's probably been 2 weeks since I went back down to 6.25. I thought for dose changes for t3 it was only 2 weeks? It will be over 3 weeks when I have my next blood tests.

No I meant hypo. When I increased to 125mcg t4 and a few days after I increased to 12.5 t3. Both times I've felt worse. Sleeping more, difficulty concentrating, blurred vision, weight gain. I haven't felt hyper at all x

Salphy profile image
Salphy in reply toSalphy

But they do say t3 should be in the upper quarter of range and I was just outside that x

Judithdalston profile image
Judithdalston in reply toSalphy

Ok, but I don't understand how with 25 mcg T4 and 6.25 mcg T3 increases you could have become hypo, or even felt undermedicated...some of the symptoms are the same between hyper and hypo ...so I presume that is what has happened. You were on 100 mcg levothyroxin for 6 weeks, and previous months working up from 50 and 75 mcg T4 I presume? I am rather concerned you are doing everything re thyroid health very quickly, and trying doses without letting them 'settle'. I presume you have had your Vit D, B12, folate and ferritin tested, what about Hashimoto's autoimmune antibodies? The vits/ mins need to be optimum in upper end/ top of ranges and if you have had heavy menstrual bleeding , and ? Hashimoto's, you might be deficient/ low, and that was making you feel rubbish. Could you post these results too for advice?

Kell-E profile image
Kell-E in reply toJudithdalston

With fT4 at the top of the range any decrease in TSH (additional T3 will do that) more rT3 is going to be converted from T4 and less T3. Therefore you can have a net loss of fT3. Therefore you can feel more hypo. I would decrease T4 and increase T3.

Salphy profile image
Salphy in reply toKell-E

Thank you, I think this will be my next step if my bloods aren't right. Otherwise I'm quite happy as I am to be almost back to normal compared to t4 only :) I just don't want him to try and take it off me its made such a difference x

Kell-E profile image
Kell-E in reply toSalphy

Even if your bloods look 'right', it may help you to reduce T4 a little.

Judithdalston profile image
Judithdalston in reply toKell-E

Just as I added, earlier this year, 25 mcg of T3 to a reduced T4 dose down to 75 mcg, from 133.5 , my bloods did show a reduced FT3 result, anf felt hypo- forum administrators suggested I added T4 back again. I did proven poor conversion problems though over 12 years, and still got to do bloods to see if FT3 has now risen. Everyone is so different, and I've found adding T3 far from simple compared to levothyroxin.

Kell-E profile image
Kell-E in reply toJudithdalston

Yeah, you can lower net free T3 both ways. It is very complex and everyone is different. But in a case of poor conversion I would tend toward more T3 and less T4. If reverse T3 actually inhibits cellular utilization of T3 (Diogenes and Rudolf Hoermann both say it likely does) then the plot thickens and bloods can be very deceiving.

Salphy profile image
Salphy in reply toJudithdalston

Yes all be tested and all fine and well in range now. Have had advice on them before and endo is happy with them too. I have b12 injections, folic acid and vitamin d since Jan 16. Ferritin was in range but lower than optimal but iron on the high side. Menstrual bleeding was light just long.

I started levo in March 2016 25, 50, 75, 88.5, 100, 112.5 back down to 100 then to 100 + t3. All at least 8 weeks between and only on gp/endo advice. I have hashi's and been gluten free since September 17 last bloods my TPO was back within normal range and TGO almost quartered and near normal range.

Yes I think I was hyper but I get more hypo symptoms. As it's happened twice now when I've increased my dose. I just meant because of this I don't think I would know if I was hyper until bloods because I've never had the typical hyper symptoms. Part of me would like to know what it felt like to have loads of energy lol X

Judithdalston profile image
Judithdalston in reply toSalphy

Sorry, me again re mins/vits having been told results ' in range' even 'good' but nowhere near optimum, even low, just checking yours are : B12 over 550 plus / top of range; folate halfway plus range; Vit D 100-150nmol/l; and ferritin 100-130 ug/l?

Salphy profile image
Salphy in reply toJudithdalston

Yes to all apart from ferritin which is 72.4 (13-150) but iron is 25.62 (6.6-26) and has been high before but they said healthy high :) x

shaws profile image
shawsAdministrator

PCOS can be connected to hypothyroidism and T3 is the only Active Thyroid Hormone (doesn't need to be converted as does T4 - inactive hormone). In japan a young woman had PCOS which resolved when she took T3.

I shall look for the excerpt I copied and copy/paste to you.

Most doctors are unaware that our menstrual cycle can go haywire due to hypo - even before being diagnosed and it should resolve when you are on an optimum dose. Doctors are very quick to give another prescription for something other than hypo instead of a decent dose of thyroid hormones. I shall give you a list of symptoms and tick off the ones you have. I

I have no problems with T3 and take dose when I get up and that's it. Well and active with no symptoms.

thyroiduk.org.uk/tuk/about_...

shaws profile image
shawsAdministrator

This is the copy of PCOS:

Multiple Ovarian Cysts as a Major Symptom of Hypothyroidism

The case I describe below is of importance to women with polycystic ovaries. If they have evidence, such as a high TSH, that conventional clinicians accept as evidence of hypothyroidism, they may fair well. But the TSH is not a valid gauge of a woman's tissue thyroid status. Because of this, she may fair best by adopting self-directed care. At any rate, for women with ovarian cysts, this case is one of extreme importance.

In 2008, doctors at the gynecology department in Gunma, Japan reported the case of a 21-year-old women with primary hypothyroidism. Her doctor referred her to the gynecology department because she had abdominal pain and her abdomen was distended up to the level of her navel.

At the gynecology clinic she underwent an abdominal ultrasound and CT scan. These imaging procedures showed multiple cysts on both her right and her left ovary.

The woman's cholesterol level and liver function were increased. She also had a

high level of the muscle enzyme (creatine phosphokinase) that's often high in hypothyroidism.

Blood testing also showed that the woman had primary hypothyroidism from autoimmune thyroiditis.

It is noteworthy that the young woman's ovarian cysts completely disappeared soon

after she began thyroid hormone therapy. Other researchers have reported girls with primary hypothyroidism whose main health problems were ovarian cysts or precocious puberty. But this appears to be the first case in which a young adult female had ovarian cysts that resulted from autoimmune-induced hypothyroidism.

The researchers cautioned clinicians: "To avoid inadvertent surgery to remove an

ovarian tumor, it is essential that a patient with multiple ovarian cysts and hypothyroidism be properly managed, as the simple replacement of a thyroid hormone could resolve the ovarian cysts."[1]

Reference:

1. Kubota, K., Itho, M., Kishi, H., et al.: Primary hypothyroidism presenting as

multiple ovarian cysts in an adult woman: a case report. Gynecol. Endocrinol.,

24(10):586-589, 2008.

Salphy profile image
Salphy in reply toshaws

Thanks so much Shaw's I will take this with me when I see him.

I have never had bad PCOS symptoms.

None before hypo diagnosis and was diagnosed with PCOS 7 months after but there weren't any cysts just "enlarged ovaries with appearance inkeeping with PCOS" so I wonder if the Levo could have helped remove any that were there.

I was diagnosed mostly on blood tests with hormone ratio well out. I had them tested recently and they were still out but so much better nearer normal. Endo just said ye things will fluctuate.

The only real symptoms I had was irregular periods, weight gain and very slight excess hair under my chin. Not enough to need to wax or anything if that anyone other than me would be close enough to notice. But I noticed in the last couple of days I could literally pull some of the hairs out with my fingers. Completely painlessly.

I wonder if it could explain why I don't tolerate metformin or inositol very well without bloating.

It's just nice to be seeing changes and feeling more positive about the future :)

shaws profile image
shawsAdministrator in reply toSalphy

Period and fertility problems are very common with hypothyroidism. I feel sorry for those who lost their babies before they found out they were hypo or due to insufficient doses of hormones so your doctor has to look after you.

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