Weight Gain - Before/after photos: Many members... - Thyroid UK

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Weight Gain - Before/after photos

shaws profile image
shawsAdministrator
90 Replies

Many members complain of weight gain when hypothyroid but still the doctors and Endocrinologists refuse to believe it can be due to being underdosed in their reliance on TSH alone and not listening to the patients, who also may not be on the correct hormones for them as individuals. Some of them tick the patient off for being overweight and put all the blame on their eating habits.

I think most of the medical profession just don't realise how upsetting it is for the patient, who is also suffering disabling symptoms too, to take the blame when it's actually the fault of the guidelines and the inability of those prescribers to look beyond the TSH and levothyroxine.

stopthethyroidmadness.com/h...

The above is the 'proof of the pudding' for many with hypothyroidism.

This is also a recent post of the member losing 43-lbs.

healthunlocked.com/thyroidu....

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shaws
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90 Replies
Sam75 profile image
Sam75

I cant post an=y photos but, believe me since I was diagnosed 15 years ago I have gone from 11 to 16 stone,,,dont eat any differently, but doc keeps scolding and trying to get me on statins...no thank you ! trouble is extra weight =huffing to walk + lower back pain.....but all my fault ......

shaws profile image
shawsAdministrator in reply toSam75

Just show him the evidence and tell him it isn't your fault but levothyroxine and not being on an optimum dose to raise your metabolism and keeping the TSH too high (I believe). You can give him a copy of this Research Article and, in fact, it is the medical profession's fault.

Fox et al. noted that with increased TSH levels, women gained more weight than men did, although both sexes gained. The researchers conjectured that women may accumulate more fat because fat oxidation is faster in men. At follow-up 3.5 years later, increases of the TSH level within the reference range “was strongly and linearly associated with weight gain.”

The concluding statements of Fox et al. are worth repeating: “In conclusion, thyroid function (as assessed by serum TSH concentrations) within the reference range is associated with body weight in both sexes. Our findings raise the possibility that modest increases in serum TSH concentrations within the reference (physiologic) range may be associated with weight gain.”

Other researchers have also reported that TSH levels—even in-range levels—were associated with obesity. A study of 4,082 Danish people with reference range TSH levels showed a positive correlation between the TSH levels and body mass index.[3] The researchers concluded, “Even slightly elevated serum TSH levels are associated with an increase in the occurrence of obesity.” (Italics mine.)

Turkish researchers studied 226 obese or overweight female patients with in-range TSH and thyroid hormone levels.[4] The researchers found that obese females had higher TSH levels than lean females.

The investigators also found a statistically significant positive correlation between TSH levels and body weight, waist size, and fasting insulin levels.

They concluded, “This study strongly supports existing, but contradictory, evidence that TSH levels are positively correlated with the degree of obesity and some of its metabolic consequences in overweight people with normal thyroid function.” (Italics mine.)

The three studies I mention above were published in 2005,[3] 2007,[4] and 2008.[2] They were published in the long-gone wake of a 2000 report from the journal Thyroid.[5] In that study, which has largely been ignored by the endocrinology specialty, researchers compared the treatment of hypothyroid patients to that of thyroid cancer patients. They found that hypothyroid patients on T4 replacement doses (dosages of thyroxine that keep the TSH within range) gained weight. In contrast, thyroid cancer patients didn’t take replacement doses of T4; instead, they took doses of T4 high enough to suppress their TSH levels. And they didn’t gain weight. The researchers concluded that T4 replacement was in fact the cause of the hypothyroid patients’ weight gain: “The excessive weight gain in patients becoming hypothyroid after destructive therapy for Graves’ disease suggests that restoration of serum TSH to the reference range by T4 alone may constitute inadequate hormone replacement.”

If GP has an email address (or his Sec) you can forward STTM link .

If we can learn it's about time they were aware and stop blaming their patients for the faux p aux of the stupid guidelines of the BTA. Who obviously don't pay attention to any Research but only that which suits their viewpoint.

thyroidscience.com/editoria...

sweetsusie profile image
sweetsusie in reply toshaws

I just wrote to my doctor and am asking him to switch me to Armor. Hopefully, he won't have a problem with this request.

shaws profile image
shawsAdministrator in reply tosweetsusie

It would be good if he did but it goes against the BTA Guidelines, despite the fact that a Scientist wrote an article to them, which despite three yearly reminders for a response, they ignored him/it.

I would never have thought that some could be so blind-sided that they ignore something which might relieve many people of many symptoms which are usually diagnosed as being unconnected to hypo instead of a prescribing a decent dose or an alternative and they absolutely ignored it.

Plus it would save the country a lot of money, i.e. people wont lose their jobs, or have to stop working due to their disabling symptoms, wont have to take 'extra meds' for the remaining symptoms. Less prescriptions for muscle/joint pain, depression, stomach etc etc. statins, of course, for high cholesterol one of the main clinical symptoms which usually resolves with a decent dose of levo or an alternative thyroid hormone.

thyroidscience.com/Criticis...

sweetsusie profile image
sweetsusie in reply toshaws

I feel your frustration, shaws. I just switched from a female doctor, who had no ears, to a male doctor, who has turned out to be my hero. He's written me back already and is more than willing to switch me to Armour. Why can't the rest of these doctors be flexible??? I just do not get it! I'm just lucky that I found one who listens.

mistydog profile image
mistydog in reply tosweetsusie

Ooh lucky you! Do tell where you are and who he is!

subhudra profile image
subhudra in reply toSam75

Hi Sam75, l feel for you. Do you know what I find most difficult...when you tell people you don't over eat and follow a sensible diet and they really don't believe you 😒. Colleagues are surprised by how little l eat and still put on weight. I don't drink alcohol have one coffee occasionally and only drink still water, no fizzy stuff, no bread, no frying and yet I am the puffed up bloated overweight one! I have to buy new clothes yearly because I fluctuate so much. Eighteen months ago I was a comfortable 12 this year 16 to 18.

Not being awkward shaws but there are exceptions to the above. I was undiagnosed for 16 years and since being on thyroid meds my weight has increased by some 50% and am getting very close to obesity. The years that I was undiagnosed saw my weight constantly increasing so, at a guess, would say that overall my weight has increased by two thirds.

Despite giving the NHS Endoknob photographic evidence of this weight gain he preferred to maintain his (unspoken) lazy and sexist assumptions.

MrsRaven profile image
MrsRaven in reply to

Loving Endoknob! Thanks for the giggle cinnamon girl .

Are you on levo? Maybe the brand doesnt suit you?

in reply toMrsRaven

MrsRaven - the term is used by many on here!! I'm on T3, have gone as high as 175mcg but according to FT3 test it's getting to the cells.

shaws profile image
shawsAdministrator in reply to

It does make you mad that they think it is the patients who are responsible when in fact they are the main culprits. They appear to 'read nothing' 'no nothing' 'see nothing' and the patients are left out on a limb.

Unexplained weight gain, before 'modern method' was introduced was one of the main clinical symptoms which would warrant some NDT.

in reply to

Here comes my old favourite saying....' Don't sit down Doc because I won't be able to hear what you are saying!..because you are talking out of your a..e!'. x In the word of Catherine Tate 'How very dare they!' I've been subjected to these statements in the past also. Strangely when I was Hyperthyroid and skinny no one said you aren't eating enough... x

Stephanie70 profile image
Stephanie70 in reply to

But what meds are you on? Synthetic thyroid hormones make you put weight on! You need an NDT like armour or Erfa! I'm living proof it works :-)

Rhsana profile image
Rhsana in reply toStephanie70

Hi Stephanie70 I'm on NDT and I am still putting on weight. How long did it take to make a difference for you? R x

shaws profile image
shawsAdministrator in reply toRhsana

We are all different. On one of the photos it was stated she'd been on Armour but switched to another NDT and weight reduced. Its just one of these things - unfortunately it's not all one size.

Rhsana profile image
Rhsana in reply toshaws

Thanks shaws , I'm on Naturethyroid 2 months in. Maybe I just need to be more patient

shaws profile image
shawsAdministrator in reply toRhsana

I think it takes years for our thyroid gland to diminish so much, so it stands to reason it can take some time to build up again. That's why its best to increase gradually taking note of your temp/pulse as well as how you feel. If we take a bit too much just drop back to the previous dose.

Rhsana profile image
Rhsana in reply toshaws

shaws , yes I am having a little trouble figuring it all out. My resting heart rate varies between 79 and 101. I don't feel over medicated on three grains, I am still very symptomatic, with aches, pains, fatigue acid reflux the works. Hair falling out even more, weight etc. But I hear symptoms can lag behind medication to up to about 10 weeks! So I will give it some more time. I',m just worried I am overmedicated and don't realise it.

shaws profile image
shawsAdministrator in reply toRhsana

I think (and I'm not medically qualified) that your heart would be much faster than usual or pounding heart if on too much hormones, both of which would make you feel uneasy, to say the least.

Sometimes a small adjustment is needed, whether it be down or up. I think you are right too that our bodies need to get used to the extra hormones in the NDT. I hope all resolves for you shortly.

Stephanie70 profile image
Stephanie70 in reply toRhsana

Took about a year! I did take armour but didn't work for me,feel great on erfa:-) I do eat gluten en dairy free but been doing that for years :-) next step is aip :-)

Rhsana profile image
Rhsana in reply toStephanie70

Sweet! I'm gluten and dairy free as well but only in the first month! Thanks for the vote of confidence! x

shaws profile image
shawsAdministrator in reply to

I don't think you're being awkward at all Cinammon Girl and have been let down by those we would have expected to be sympathetic and helpful. :) It such a struggle - people get tired and worn down just trying.

WOW ! X

Beverleyb profile image
Beverleyb

I put 3 stone on within months after having a hysterectomy, that was 20 years ago and no matter what I eat or what thyroid meds I have tried the weight seems to have stuck. I realise now I was hypothyroid for 10 years without treatment. What upsets me is when I see various GPs or consultants they always mention my weight, so i usually give them an ear ache bashing as to why I am overweight!

shaws profile image
shawsAdministrator in reply toBeverleyb

It is upsetting as they seem to be very pointed in their remarks that we're unwell because of being overweight. Yet they wont prescribe an alternative which might work for you.

I've just read one of the articles and the person was on Armour but not sufficient and changed to another NDT and the weight came off.

Beverleyb profile image
Beverleyb in reply toshaws

That sounds promising shaws, I might consider a change of NDT.

whispers profile image
whispers in reply toBeverleyb

I had hypothyrodism for nigh on 20 years, 25 mgc of levo all that time, thin as a lat, size 8/10. had a perforated duodenal ulcer, emergency surgery, stopped smoking, put on omeprazole which I took for 4 years and became very ill and my levels unstable, put on three stone in a year, diagnosed menopausal and hashimotos, , had a hysterectomy, levels still constantly up and down, diagnosed low in iron and folate, b12 bottom or range etc etc, given one course of iron and folate and thats it. Told to exercise more and eat sensibly, which I try to do. and thats it, no weight loss, in fact, my clothes are tight again but not sure if thats with the heat at the minute, and possible inflammation. but its only since i had higher levels of levo that the weight piled on

shaws profile image
shawsAdministrator in reply towhispers

I am not medically qualified but even though your dose was increased it may still not have been sufficient for your body,i.e. to raise your metabolism. Being mindful it usually takes years for us to be diagnosed and unfortunately there's no quick fix. It is slow and gradual.

When you get your next blood test, i.e. the earliest possible, and fast (you can drink water) and allow 24 hours between your last dose of levo and the test, get a print-out of your results with the ranges (these are important) and post on a new question.

Beverleyb profile image
Beverleyb in reply towhispers

So unfair, I wonder why its mostly 3 stone of weight people put on when they are hypothyroid.

pam13 profile image
pam13 in reply toBeverleyb

Very good point.. I put on 3 Stone too??

whispers profile image
whispers in reply toBeverleyb

Would be interesting to see if a survey has ever been done as to how much weight people actually did increase by :-)

stiltzski profile image
stiltzski in reply toBeverleyb

So did I! I have managed to lose one of those three but am now stuck!

shaws profile image
shawsAdministrator in reply tostiltzski

Maybe a small increase in thyroid hormones keeping in mind I'm not medically qualified. :)

stiltzski profile image
stiltzski in reply toshaws

Thanks. Yes, I am thinking of going from 2 to 2.5 grains of Nature Throid (privately prescribed) but my TSH is down to 0.02 so my NHS GP would not be in favour, of course!

nightingale-56 profile image
nightingale-56 in reply toBeverleyb

I've put on another 1/2 stone since having Salpingo-oophorectomy in February - to go with the 3 stone since sub-total thyroidectomy in 1978.

faith63 profile image
faith63 in reply tonightingale-56

ovarian cysts rapidly clear when on proper doses of thyroid medicine..it is well documented..wish my doctor would have frickin!! Told me!!! I am so angry at my doctors..all doctors!!!

Amber_Jet profile image
Amber_Jet in reply tofaith63

do you know any more about that - I have PCOS and the dr tells me my thyroid is fine despite the symptoms

I'm always freezing, frequently depressed, constantly exhausted

The last few months I've had no interest in food; during which little while I've put on a stone.

Normally PCOS makes me hungry all the time but I've kept a steady weight for years on healthy diet that used to be really hard and just got way too easy.

shaws profile image
shawsAdministrator in reply tonightingale-56

I hope you are on more than levothyroxine since your since sub-total thyroidectomy in 1978. I hope some T3 hAS been added at the very least.

nightingale-56 profile image
nightingale-56 in reply toshaws

I have added T3 to the Levo for the past year, but have still only got my FT3 up to 5.1 (3.1 - 6.8) which is much too low for me. I can't seem to raise it higher by adding more T3 and then the FT3 goes down a bit more. I am on 75mcg T4 and 6.25 mcg T3 and feel it is low Cortisol that is holding me back. Cortisol and DHEA are very low and I cannot seem to raise either. D3 is 112 and B12 989. At the moment my ESR is very high at 40 (0.0 - 7.0) and Red Blood Cell Distribution Width, and Red Blood Cell Count are both slightly raised. So something is going on and I feel this could be a ligament problem (old) in my stomach, but could be low oxygen in cells. Seeing Endo early September. GP's as usual, not really interested and think I will have to take this further. I have to say my temperature and pulse are both fairly good. Temp 36.6 basal, rising to 37.00 by lunchtime and pulse 68 - 82. BP 140/80. Any views would be appreciated. Thanks for asking Shaws.

shaws profile image
shawsAdministrator in reply tonightingale-56

The up-to-date equivalence for T4/T3 is 3-1. See page 80 on this link.

tpauk.com/images/docs/reduc...

nightingale-56 profile image
nightingale-56 in reply toshaws

Thanks for the link Shaws. I did know the up-to-date equivalence but do not seem able to tolerate more of either T4 or T3. The Mercury Pharma Levo badly depleted my adrenals and I am still having to work on them. Most blood levels are quite good, just the three I mentioned being out. I am feeling a bit better this morning and am beginning to wonder if my back problems are causing a lot of my problems.

shaws profile image
shawsAdministrator in reply tonightingale-56

It can sometimes be the fillers/binders in the hormones that cause some symptoms. I was having dizzy spells and it wasn't until I switched to another hormone that it resolved. I still took the same dose.

shaws profile image
shawsAdministrator in reply toshaws

I wonder if it is the levo you cannot tolerate rather than the T3? Just a thought as the more I reduced T4 the better I became. Of course that may not be for everyone as we're all different, unfortunately.

shaws profile image
shawsAdministrator in reply towhispers

I don't know how you survived on 25mcg of levo that's a ridiculous amount

whispers profile image
whispers in reply toshaws

me niether, but I did, I didn't have too many obvious symptons, but I also didn't have the internet so was very uninformed on things then, I just got on with it, I'm thinking, with smoking, it kept the antibodies at bay some what, and I didn't know any different with the hypo, my level was around 2 most of the time, and I managed on that, looking back, I can see just how poorly I actually was :-(

I'm worse now though and I have to link it with stopping smoking and my two operations along with the doctor not knowing how to help

shaws profile image
shawsAdministrator in reply towhispers

I hope you will be able to improve your condition. Feeling unwell isn't good. I can say that now I am well and sometimes you just get on with being under par and you forget what a 'normal' life is like.

faith63 profile image
faith63 in reply towhispers

Self treat!!

sctjan profile image
sctjan in reply toshaws

That Is little you do not need it. Hypothesis is a terminal ill will die. How soon will die without treatment

sctjan profile image
sctjan in reply toBeverleyb

Hi, You say you live in hypothesis without treatment for 10years. You still alive? What is ur blood test

MrsRaven profile image
MrsRaven

My first experience of this ignorance was after I had my eldest in the 70s. I was 10st 7lbs at full term, started off at 8.12. After he was born my weight dropped back under 9st. my ex said dont get pregnant again. Not trusting him to take precautions I went on the pill. Within a year, in spite of working full time, going dog training and walking miles with the dogs, my weight had soared to 11stone. My beautiful long, satiny black hair broke off and fell out,and turned to wire. I was exhausted, depressed, no sex drive etc. i realise now it was all thyroid driven. But all I got was, youre eating too much,you're eating the wrong stuff stop being a pig etc. it wasnt until I came off the pill and lost a stonestraight off that I realised it was the pill. Then I went GF which was easybecause my ec and I split up and I could cook differnt food. In my menopause my GP put me on HRT to "make me feel better" and within months I was back where I started. You mess about with hornones at your peril!

shaws profile image
shawsAdministrator

That's good news and it shows what the right meds can achieve as well as relieving your symptoms.

linda96 profile image
linda96

Hi Shaws,

I only have the before photograph!

Iv taken a giant leap this week, stopping the t4 last Saturday and just taking t3. I have not had any bloods done, but just became sick to death of the way I was feeling and the awful weight gain, in my case 9 1/2 stone when I got married in 1974 but I now realise already at the beginning of my thyroid journey. Since January struggling to get down from 15 st 4 lb. with a good stab at the keto diet, Iv got down to 14 st 9lb.

It's Thursday, 5 days later on 25mcg split into 2 doses of just t3 and I feel better. This satrday will be the 7th day and therefore most t4 hopefully "left the building", so then I can see where I'm going.

I have been back to my GPs over the years and nothing done at all. Iv been told off for my weight gain.

I just hope that within the next 5 years this whole thyroid scandal will be a memory and all GPs and endo's be fully educated in the thyroid complexities and correct treatments. Fingers tightly crossed!

The photographs you have put up are too powerful a testimony that things are seriously wrong now. It must change.

Thank you shaws

shaws profile image
shawsAdministrator in reply tolinda96

I doubt nothing will change as they appear to have 'closed ears' and make the most stupid of remarks. We only know they are stupid remarks because we've 'Been There - Done That'. Despite their qualifications they haven't had the experience that their patients have had to go through and symptoms never being taken into account. They haven't lost their jobs through fatigue, memories failing, heart struggling, etc. Relationships dissolving through no fault of their own.

I am, of course, not referring to those excellent doctors who put patients symptoms at the foremost and then strive to see that they get to an optimum of thyroid hormones

linda96 profile image
linda96 in reply toshaws

shaws - then action needs to be taken to stop it. I'm in my mid 60's but would take up "arms" to change it.

Tom Kidlon has sent out for second year I believe to 500+ GP's in Ireland a "data" sheet of diagnosis and treatment of ME/CFS. Iv seen it on Alternative site and its looks the biz. It's not official in any sense.

Can we not do the same for our thyroid problems? If big pharma has access to GPs by their Reps giving talks and showing them products and hosting symposiums then surely an alternative view of thyroid diagnosis and treatment could be put before them. If enough "data" sheets got to enough medics at roughly the same time then someone somewhere would have to take notice.

I'm sorry because I'm really upset about it, my life has been ruined by this, and my granddaughter looks like she's on the way to a diagnosis soon. That's the final straw.

shaws profile image
shawsAdministrator in reply tolinda96

If you become a member of Thyroiduk.org.uk started by Lyn Mynott due to she is always trying to 'open minds' in the professionals and has had interviews. Dr Chris Steele is one of our Advisors and we also have other good Advisers who are scientists who work tirelessly and care about how we are being treated. She also appeared in the Scottish Parliament when a member had a Petition before them to change the way we are diagnosed/medicated.

TUK started off then moved into her Garden Shed. It is now an NHS recommended Choices for info on thyroid gland dysfunctions.

We had a great Conference in 2014 with great speakers.

linda96 profile image
linda96 in reply toshaws

Hi shaws - Iv been with The BTF for years and will be sending them a note to say Not to renew. I will join Thyroid uk as its aims are my aims.

How many GPs went to your conference in 2014? Don't get me wrong I know exactly how that sentence reads and you could be v vexed with me for saying it. I apologise straight away if I have caused you any offence or offence to ThyroidUk .

It just feels like more direct action needs to be taken. Its GPs that have to be made to look the real info on thyroid in the eye! And now! I can't wAit for them to mess up my grandchildrens lives as well. My late well loved father died of thyroid cancer as did my mothers brother. My father put on nearly 5 stone after going on thyroxine. He died in 2000, jus saw the millennium in and died Jan 22. I feel robbed of his presence for at least another 10 years.

You've spoken about your father in previous blogs don't we owe it to both our fathers to sort this out sooner rather than later.

Apart from the Data Sheet Iv already mentioned could we not get a class action going for all the weight gain which I believe has been well documented in peer reviewed Journals. It is never been mentioned as a side effect of levo to me. Iv just checked my activis sheet for side effects and it says contact your dr if you experience weight LOSS! (Some hope). Not weight gain. I wonder if any of the different manufacturers of levo leave that hot potato off their sheets.

Iv been v passive about thyroid in the past due to total ignorance on the subject - but since last year when I joined HU and now being better informed I'm going to join the Thyroid Warriors, whenever they pop into existence!!

in reply tolinda96

linda96 - I've been on here for around 5 years and feel that we are no further forward. I also have Lyme disease and it's taken a millionaire businessman who's family were affected by it to successfully demand meetings with Government ministers and really push for change.

Yet thyroid disease is still viewed as a condition that fat, middle-aged women have and it's their own fault for eating too much. Obviously apologies to the chaps on here, it's not easy for them either.

I feel disappointed that nothing has changed on here and perhaps it's time for a review with input from Forum members.

shaws profile image
shawsAdministrator in reply tolinda96

I am glad you are joining Thyroiduk.org.uk as it is the BTF and BTA who are adamant about thyroid hormones and the TSH. They are inflexible and doctors who don't toe the line are persecuted as well as prosecuted and have had to appear before the GMC for treating as they were taught as medical students.

At our Conference there was Dr Chris Steele of GMTV, Dr Malcolm Kendrick, not one to waste words and we have some excellent Trustees who fight the good fight as well as eminent researchers .

thyroiduk.org.uk/tuk/About_...

These two links were after our Conference:

drmalcolmkendrick.org/2015/...

healthunlocked.com/thyroidu...

nightingale-56 profile image
nightingale-56 in reply toshaws

Shaws, but still, it seems, that we are not being listened to.

shaws profile image
shawsAdministrator in reply tonightingale-56

They definitely don't listen. Even recently someone who saw a Prominent person who said it is only the TSH that matters. That phrase sounds like a death knell for many in that they wont even get an opportunity to add T3 or try NDT.

nightingale-56 profile image
nightingale-56 in reply toshaws

Was told that the TSH was the figureto go by only this aftrnoon at GPs. this GP agreed it was a very rough guide though.

shaws profile image
shawsAdministrator in reply tonightingale-56

It is only a 'rough guide' because they've made it so. The patient should be given sufficient hormones for them as individuals, and no need for blood tests once diagnosed as long as they are symptom-free. If patient is still complaining after a suitable time and increases, a switch-over or addition of T3 should be tried.

sweetsusie profile image
sweetsusie in reply toshaws

I just now got an answer from my doctor! He's more than willing to switch me to Armour. I'll take the rest of the levo I have before I switch, though, just to save a little $$, then the switch will happen. He's so openminded, I can't hardly believe it!! I had a doctor before him (a female) that didn't have ears at all...very young woman and didn't listen to anything I would say. So refreshing to find a new doctor who has DUMBO EARS!!! Love him!

shaws profile image
shawsAdministrator in reply tosweetsusie

Congratulations and that's great news and sincerely hope all goes well for you. It might take a little while for you to get to a dose which suits as it takes about 6 weeks, I believe for levo to leave your body. So you can switch-over to roughly what dose the levo is and every two weeks increase NDT by a small amount until symptoms are relieved and you feel well. If at any time you feel it's too much drop back to previous dose.

Before you begin I'd take my pulse/temp several times a day (the Basal Temp test was used for years - i.e. temp taken before getting our of bed). This gives you a starting point in case your pulse/temp rises as sometimes we can feel quite hot but temp is normal.

(Bear in mind I'm not in the least medically qualified - just have had the experience of undiagnosed hypo and hypo and not recovering until switched from levo).

sweetsusie profile image
sweetsusie in reply toshaws

Great advice, shaws! Thanks! Don't know what I'd do without checking this blog every single day. I felt so alone for so long with a female doctor. I'd never have another female. I think the male doctors tend to want to solve problems and be more hero-like, in my humble opinion.

shaws profile image
shawsAdministrator in reply tosweetsusie

I cannot agree as I believe the majority of doctors only refer to the TSH if they take a blood test at all. Unfortunately, not one of the many doctors GPs) I saw or consultants (private) ever did a blood test and when at death's door with a TSH of 100 (on advice of a person who does first aid) did I finally get diagnosed.

Before that I also had a barium swallow and told I had a post-cricoid web in my throat and i would choke if it wasn't removed. I had no such thing but he still couldn't tell me what was on the barium swallow as when I came round from anaesthetic he told me it wasn't a web and I asked 'well what is it then'. He couldn't reply/.

Stephanie70 profile image
Stephanie70

I lost all my hashimotos weight when I started on Erfa an NDT! Feel so much better more energy and my cholesterol levels are great now because it was always high! Lost 1 stone in weight and it's been a year now so it doenst seem to be coming back! Not that I want it to :-)

shaws profile image
shawsAdministrator in reply toStephanie70

Congratulations and well done.

JOLLYDOLLY profile image
JOLLYDOLLY

At my last visit (Monday 18th), I was told that I should cut my calories to 1200 and the implication was that my husband was an enabler! I should take responsibility for my actions. You are automatically categorised. But I do not drink, smoke or take drugs. except for my medication. Everybody has noticed that I eat little compared to my size, but the "professionals" do not see that. I was even asked if I had considered bariatric surgery! :( But evidently all the good that T3 obviously does, is completely ignored and they say that it is doing the opposite. The photos prove all the good it is doing.

shaws profile image
shawsAdministrator in reply toJOLLYDOLLY

Send him the link above: :) - It is self-explanatory and ask for some T3 to be added to your dose of levo on a trial basis for six months :) .

Stephanie70 profile image
Stephanie70 in reply toshaws

Shaws you so right it's the T3! I used to only be on T4 now since being on Erfa which is a natural desiccated thyroid hormone with T4 and T3! So maybe cytomel which is a T3 would help you guys if you can't get hold of an NDT the in uk? It's worth a try?

whispers profile image
whispers in reply toJOLLYDOLLY

no eating enough for your body can also hinder weight loss belive it or not, make sure you eat a balanced diet and if you can't manage full meals have a few smaller ones, it may well help a little, good luck

JOLLYDOLLY profile image
JOLLYDOLLY

If the worst happens and I lose my T3 medication, what is the best way of obtaining T3/alternatives without breaking the bank? I am getting really anxious about the future but equally anxious about buying it off the internet :(

MichelleBerko profile image
MichelleBerko in reply toJOLLYDOLLY

Hi JollyDolly

I will message you privately with that info 🤗

JOLLYDOLLY profile image
JOLLYDOLLY in reply toMichelleBerko

Thank you MichelleBerko :)

shaws profile image
shawsAdministrator in reply toJOLLYDOLLY

Put up a new post as this one is quite far down this thread and ask for a Private Message to be sent to you.

Hoxo profile image
Hoxo

An old family friend with under active thyroid is now prob 20+ stone, having heart problems, now got type 2 diabetes, has depression and panic attacks and has just lost her job. I've been trying to help her but she still is too nervous to go it alone. Her GP has told her re her TSH level on a miserley 50 mcg dose of Levothyroxine, 'we like to aim for a TSH of 3'. Poor woman. Her state is THE FAULT of that doctor and the whole guidelines fiasco. It's a scandal.

shaws profile image
shawsAdministrator in reply toHoxo

You are positively correct her condition is called iatrogenic (meaning caused by a doctor from the Greek word for doctor)

Medical Definition of iatrogenic. : induced inadvertently by a physician or surgeon or by medical treatment or diagnostic procedures

I cannot find a link at present but the doctor said that if we aren't optimally medicated we can then get heart disease, blood pressure problems or diabetes. This doctor also stated:

You can also have a variety of blood tests to see if your results are consistent with hypothyroidism. For example, you measure your cholesterol and LDL levels. These are high in many people who have wholesome diets and exercise regularly but are under-treated by thyroid hormone. You can have your erythropoietin measured. This is a protein that may be low when under-regulation by thyroid hormone has decreased the oxygen requirement of your tissues. And you can have your anti-thyroid antibody levels measured to see if they are high.

You notice that I didn’t include blood tests for your TSH, free T4, and free T3 levels. These tests are of limited value. They are meaningful only when they are way out of range. If they are in-range or close to in-range, they are useless in telling your whether you have enough thyroid hormone regulation. The only thing they tell us is the effect of the pituitary’s TSH on the thyroid gland, and the effect of the thyroid gland’s hormones on the pituitary. They tell us nothing whatever about the effects of thyroid hormone on the cells of any other body tissues. To infer from the levels of these hormones the thyroid or metabolic status of other tissues is not only indirect—it’s a wild and scientifically-unsound inference.

I could go on and one with a long list of other useful and often useless tests, but my point is this: We have plenty of tests that indirectly measure the cellular effects of thyroid hormone, and they are far more diagnostically meaningful than using the TSH, free T4, and free T3.

web.archive.org/web/2010103...

In the meantime your friend suffers anxiety plus the loss of her confidence and job.

web.archive.org/web/2010103...

EleanorM-G profile image
EleanorM-G

I have read the below comments, but I am still confused about the weight gain and why it happens. Do some meds/or not taking meds make us hold on to the fat we eat? Or does it make is hungrier/crave food to give us the energy we don't have, so we eat more and out on weight?

After self medicating on armour and cytomel (making me better, but I am under medicating) for 8 yrs, docs have finally agreed I'm under active and are starting me off on levo. I am terrified this will effect my weight as I have a history of eating disorders and DO NOT want those triggering again.

shaws profile image
shawsAdministrator in reply toEleanorM-G

Some people do not gain weight on levothyroxine. I am one of them.

Unexplained weight gain is a common symptom of undiagnosed hypothyroidism due to metabolism being lowered because were are hypo. Pulse and temp are usually lower too before diagnosed and many complain of feeling cold.

When we are prescribed levo to increase our metabolism and if the doctor prescribes sufficient for our bodies, there shouldn't be a big problem. It's when they stop prescribing, I believe and I'm not medically qualified, when the TSH is just within the top of the range instead of around 1 or lower that a problem may arise.

Some of our members have reported weight loss on levothyroxine i.e. back to the weight they may have been previously.

Gerry1969 profile image
Gerry1969

I wasted a year letting GP's and Endo's give me Levothyroxine. I've finally ditched it completely in favour of T3 (25's 3 x per day) and I've never felt better. I have energy, my mind is clear, the weight is gone back to my normal pre Hypothyroid size and as an added benefit.... the old drive is back. I don't know... but maybe there's sometimes too much emphasis on test results rather than how you feel.

I know some people will want to jump on this but I'd rather live a short but full life than the debilitating one I had before. You only get one shot at it and when it's over... that's it.

shaws profile image
shawsAdministrator in reply toGerry1969

There's no reason to jump on you taking T3 (I take T3 only but need less than you so it is very individual to each person). It's the best thing I've done and have my health back too.

Dangers have been overplayed by the medical profession as they don't want to prescribe and spread rumours.

People who are Thyroid Hormone Resistant (not hypo) need extra large doses, one person took 150mcg daily in order for his brain to function as well as his body.

Most doctors trained before the 60's the emphasis was on the symptoms alone and how the patient felt. That skill has been diminished with the introduction of blood tests for diagnosing alone and not knowing one symptom from another.

(I am not medically qualified just have my own experience).

subhudra profile image
subhudra

Ladies you can be proud of yourselves for your triumph over the ill advised medical profession. This evidence speaks volumes. Strong, courageous beautiful women make a change in the world so others can follow. Congratulations to you all ❤

mistydog profile image
mistydog

Pleased for you, but I'm in the UK! Oh well!

sweetsusie profile image
sweetsusie in reply tomistydog

Bummer...but there's got to be some heroes over there, too. Just keep looking...don't give up.

faith63 profile image
faith63

i like this better.. look at these photos and the symptoms list. This is about what they call type 2 hypothyroidism, which is cellular resistance but it is all the same, symptom wise, except Hasimotos has more odd symptoms, which are not due to hypo.

townsendletter.com/Dec2008/...

shaws profile image
shawsAdministrator in reply tofaith63

Faith, thanks for posting and it is very informative and I like all the familiar names quoted:-

According to many reliable sources, including doctors Broda Barnes, David Derry, Jacques Hertoghe, and James Howenstine, at least one-third to one-half of the US population suffers from slight to severe hypothyroidism."

Unfortunately for the Canadians (I think he was Canadian) he lost his licence due being pursued for making patients well and going against their current guidelines. He also wrote lots of articles in the internet.

faith63 profile image
faith63 in reply toshaws

its dreadful isn't it and ruins so many lives. Hashimotos is the main reason here. It can be reversed according to functional medicine and is due to leaky gut..intestinal permeability and food sensitivities, just like most autoimmune disease, maybe all.

shaws profile image
shawsAdministrator

It is against the rules to post doctors names on the open forum without their permission. So if you want to you must send a private message to the person instead.

sweetsusie profile image
sweetsusie in reply toshaws

Sorry, Shaw!! I know better than that! He's not my doctor anymore anyway...

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