Hypothyroid AND had weight loss surgery? (ie ga... - Thyroid UK

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Hypothyroid AND had weight loss surgery? (ie gastric bypass/band/gastric sleeve/duodenal switch etc) READ HERE THEN

nobodysdriving profile image
33 Replies

I was hoping to form a sub-forum/support group for people who have had weight loss surgery AND are hypothyroid, mainly to share information regarding the two 'conditions' together (for example the malabsorption due to these weight loss procedures and how it affects your hypothyroidism and its management).

I am not even sure how to do this and if it would be a sub-forum of an existing forum or a forum on its own or just an 'email subscribing' thing, who knows....but first I'd like to gauge if there is anyone out there who fits in this group?

Feel free to post here if you fit this group (hypothyroid AND already had weight loss surgery) or if you don't want the 'world' to know you have had weight loss surgery you can send me a private message and I will not divulge your name/situation to anyone without your explicit permission.

Many thanks

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nobodysdriving
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33 Replies
GoGonot profile image
GoGonot

Hi, I have been hypothyroid for 13 years and my weight has fluctuated by about 4 stone over those years. I had a gastric band in December 2010 and I lost 4 stone, I kept it off until June when my TSH level went to 8.9 and I began to suffer chronic fatigue, I have since put on 8.llb and I am devastated as I am eating a lot more due to the tiredness. However I have to say that the loss of quality of life and other symptoms is far worse at the moment and I am sure I would have put a lot more weight on if I had not had the gastric band. I am hoping an increase in the levothyroxine will begin to have a positive affect in the near future.

I did not take any extra vitamins before that as I felt I was getting enough from my diet, however I am now trying ashwaganda and vit B12 for energy.

If any one is thinking of a gastric band you need to be aware its not an easy option especially if you have a sweet tooth as it does not control this or snacking but I will say it helps. The band does 30% of the work while you have to have the willpower of 70% which is why people do put on weight. Some symptoms are not very nice and that's why it is not an easy option. I am happy to give my perspective if anyone wishes to contact me.

kerry

nobodysdriving profile image
nobodysdriving in reply to GoGonot

thank you Gogonot (aka Kerry)

I also had a gastric band, which was then taken out and converted to a gastric bypass 2 years later.....did not know back then I was hypothyroid, TSH was 'in range' blah blah (you got the picture) :P

I think you did the right thing to add vit B12, in my private doctor's opinion 'everybody' should take a basic multivitamin/mineral 'package' daily, even more with any weight-loss surgery or malabsorption condition. The band may not affect as much as a bypass but it still affects you x I can't reply much right now but may add more later, thank you for your input.

Dreamer39 profile image
Dreamer39 in reply to GoGonot

Would love to chat in private with you.

firewolf profile image
firewolf

i've had the bypass for 8 years, started out 295 loss down to 146, 8 years later when back to 295, found out low thyroid, and anemic, have to have iron every 6 months to 1 year, with medicine have lost down to 245 right now.have to have b-12 too.i just got them to doctor for the thyroid been border line for , long before i had the surgery!.

nobodysdriving profile image
nobodysdriving in reply to firewolf

thank you firewolf. How are you having your iron? injection or in the vein (IV) ? and the b12, how is your doctor going to give it to you and how frequently? do you live in the UK or another country? do they test you regularly for other things like: vitamin D, folate, full blood count/iron studies, ferritin, Parathyroid hormone, bone profile, liver function, renal function, vitamin A, vitamin E, other B vitamins (ie folate too). Do you get any supplements like multivitamins prescribed? if so in tablet or liquid? there is lots of research saying that we (after bypass) need all medications/supplements ideally liquid as tablets go out of our little stomach pouch 'too quickly' and straight into the jejunum. Because they do not stay in the stomach and our stomach produces little very little stomach acid too and they bypass the duodenum and the initial part of jejunum then they get partly non absorbed or not absorbed at all.

I am going to see the bariatric team end of this month and I will ask for my multivitamins/iron to be changed to liquid from now on (am on tablets). I also want them to up my B12 injections from 3 monthly to monthly as I do them myself monthly anyway as 3 monthly I am kept 'deficient'.

All these things 'do' affect the thyroid and how our bodies use the thyroid hormones, it's like a big orchestra, everything has to work together x

PS I also really struggle with my weight again x

headinjuryhypo profile image
headinjuryhypo in reply to nobodysdriving

I'd like to add to nobodysdriving's excellent list, that growth hormone deficiency might also be an issue. A friend of mine has struggled her whole life with obesity and been diagnosed hypothyroid, but she was recently - at last! - diagnosed additionally with GHD and started on replacement growth hormone. She had a struggle to get diagnosed, because apparently a growth-hormone-deficient response isn't reliable in an obese patient, so she literally nearly killed herself losing weight, running every day, starving herself, feeling terribly ill, and lost enough weight to 'pass' the test and get treatment. And now even though she had to miss a week's running recently she has not put back any of the weight. Hypothyroidism can be just one part of a bigger picture of pituitary dysfunction, which can include growth hormone deficiency, ACTH deficiency (cortisol) and oestrogen/testosterone deficiency, and an excess of prolactin. You can find more information by googling, or going to the headinjuryhypo website which we set up after our son's suicide.

halifaxlass profile image
halifaxlass

Just a note of caution about gastric band surgery. My daughter had this done due to polycystic ovary syndrome & horrendous weight problems, she was on a very healthy diet and couln't shift an ounce due to the condition so didn't have it done on a whim. All was well for 18 months and she lost a lot of weight but due to complications, a GP who ignored what she said to him, the band ended up ruturing her stomach beyond repair & this was removed in an emergency procedure which thankfully saved her life. When the NHS are brilliant they are fantastic & she had an excellent surgeon. She was 22 & 6 weeks away from graduation so she picks her moments !! She's doing well now but it was a very long road to recovery & this isn't your 'average' have a band and loose weight story, please think very carefully about possible complications before going down this road. My weight gain due to thyroid drives me nuts but I wouldn't consider taking this route ever.

Take care all,

Cath xx

nobodysdriving profile image
nobodysdriving in reply to halifaxlass

thank you Cath, it is very disturbing/sad when things 'go wrong' and it must have been 'very' scary for you and your daughter at the time, am so happy she's come out of that one. I do know of many bad/negative stories, I've had a friend with complications both post the band then the bypass (she had both, one then the other). I have also heard at least double the amount of 'good' stories, so both happen of course.

What I am hoping with this thread is to get to know other hypothyroid people who 'had it done' (not thinking of having it done), what is done is done and I cannot reverse my bypass (which thank goodness never gave me any complications). Surgery always carry risks, if I knew what I know now I may not have had the procedure but at the time my surgeon did a very good job of trying to explain and make me take on board the risks, all of his patients also had to go very strict psychological assessments, we were all 'annoyed' by how long it was taking to have the surgery but later knew 'why' he was so strict.

MAL62 profile image
MAL62 in reply to nobodysdriving

I had 1/2 my thyroid removed and have been hypothyroid for years. I must have gained 60 lbs. I am seriously considering the gastric sleeve. You said if you knew what you know now you may not have had the procedure.....why?

nobodysdriving profile image
nobodysdriving in reply to MAL62

because with my thyroid optimally treated and a high fat no grains no sugar diet I have lost all the weight whether I never did with the gastric bypass. Also the weight loss surgery makes me malabsorb my nutrients as a result it is much harder to keep my health stable and keep the risk of dementia low.

firewolf profile image
firewolf

iron by iv, the b12 by injection, he checks me every year for all of what you said. i'm from usa. , yes i have to take liquid when ever i can.

nobodysdriving profile image
nobodysdriving in reply to firewolf

sounds like you are getting better 'care' than me which is good. they have lumped me with really hard coated vitamin/iron tablets, do not monitor me for all the blood regularly (only had vitamin A / E / K tested this year after like 5 years of them not being tested and my vitamin A is low), vitamin D was always low on what they gave me I self supplement with higher amounts and they refuse to give me more, they would rather I stayed deficient, same with b12, I am getting very very angry and now I will NOT let it rest until I get the care I should be getting. Let's see what comes out of my appt at the end of october sheeesh xx

123happy profile image
123happy in reply to nobodysdriving

Good luck with that Hun. It really p*****s m off that we have to fight for everything, every step of the way. Grrrrr

PinkNinja profile image
PinkNinja

I feel very sad and very angry that patients have had to resort to major surgery because their hypothyroidism wasn't diagnosed due to 'normal' blood results. Things need to change :X

(((Hugs))) to you all.

Carolynx

nobodysdriving profile image
nobodysdriving in reply to PinkNinja

tell me about it :( hugs back x

hpkett profile image
hpkett

Hi guy's, will be honest I had gastricband put in say about 7 years ago started of well. Then started being ill. I was having problems eating meat, pasta , bread, rice. Basically loads of stuff. I was accused of eating to fast .the thing is my grand children ate faster than me. While on holiday in good skegness. Had a phone call see doctor. When I got back found out I had a uat. Put 125mg lethroxin. Had to have fluids taken out due to being sick still with gastric band. I weigh more now than I ever did and I still can't eat what I want. And grandchildren still beat me eating. And sometimes still being sick with food. No fun. And right now I hate my life. Personaly would change my life if I could. Lov hp kett.

nobodysdriving profile image
nobodysdriving in reply to hpkett

dear hpkett, here's a big hug for you, I am sorry about all of that, really am :( Please do not hate your life, there are many: your grandchildren for a start who 'love' your life, love that you there around them and would not want it any other way, yes really. Sometimes there is just too many things giving us a hard time and this can be very overwhelming, it is really difficult to sit back and approach it one little step at a time, but that is what we must do: take one little tiny tiny step at a time, if you look at as much as 2 steps then it gets too much and you 'collapse' and you just tell yourself you are worthless which is 'not true' it is only hard and it would be for anyone else.

So remember, think about one little step to take (pick one of the easier ones to start of course) and just work on that one in your own time. See if anyone you know can help you too, even just by talking about it, but talk just about that little one step, if you even think of the others it will be too much :)

hpkett profile image
hpkett

The worse thing Is I waiting on what is wrong with my brain.as I keep having sishure can't spell type episodes as well. Must admit god does throw stuff at you to see how you cope. My family are my life plus my grandchildren snd my poor hubby who, works and then comes home and looks after me.

Gastricmess profile image
Gastricmess in reply to hpkett

I was diagnosed both epileptic and hypothyroid only after having gastric bypass surgery.

Flick39 profile image
Flick39

Hi. I had a Gastric Bypass 9 years ago, have been diagnosed with hypothyroidism for about 4/5 years now and am about to undergo a Revision op (correcting something that has gone wrong) with my bypass.

Roux-ny profile image
Roux-ny in reply to Flick39

Hello,

I am on a similar situation. I'm considering a revision surgery. Did you have yours? How did it go?

tracyd2 profile image
tracyd2

I have had Hashimotos for over 20 years and have never had the tablet dosage changed - apparently all is normal, but I feel unwell again. I also have a gastric band, had revision surgery after it slipped, but fingers crossed all good now.

I cannot lose weight although I lost too much with a slipped band, but still unhappy with my weight and desperate to lose two stone to feel normal.

I have started to research the effect of diet on Hashimoto's patients and am looking at supplements too.

Any advice would be appreciated. Thanks Tracy

ThinnerHealthier profile image
ThinnerHealthier in reply to tracyd2

Hi. My cousin has that and what most doctors won't tell you is that you can successfully control your weight with what you eat. It is the antibodies attacking the thyroid and food plays a major role. Google. Research. She has. Lost 17lbs in 2 months no surgery.

Wakeup2007 profile image
Wakeup2007 in reply to ThinnerHealthier

How did she do it? I have been trying different forms of diet and exercise for over 7 years with no luck. Doctors don't help and it's useless here in the US in my state to find a good doctor.

Can you pm and let me know how she did it? Any information is much appreciate. Thank you

luwill profile image
luwill

I had the Roux en y done on 4-29-14 and today 6-23-14 I find out that I have hypothyroidism. I had metabolic issues before this, but no thyroid issues. Now could this be caused by my body changing so fast, meaning the weight loss coming off so fast? I lost 40 lbs so far and I started at 270 lbs.

Keysha123 profile image
Keysha123

Hi , i am very worried :(

I had a gastric sleeve done 9 months ago and only lost 10kg (22pounds)

I have been diagnosed with underactive thyroid before i had the surgery done , my private doctor told me to take levothyroxine for a week only. Am not on any tablets im just on a diet and exercising but i feel tired and lazy can't even go to the gym anymore. I don't know what to do. Everytime i go to the GP they ignore everything i tell them. Also i feel like i m eating a lot , the first 4 months i couldn't eat a lot only small portions every 3 hours but now i eat normal :(

what should i do i am getting depressed i really want to lose weight.

Four_Thor profile image
Four_Thor in reply to Keysha123

First of all, Levo is a pill that you're going to have to take for more than a week! You'll have to take it for the rest of your life in order to maintain your levels. It takes months to even start feeling a difference so I don't know what your doctor is talking about when he said to just take it for a week.

Second of all, I was diagnosed with thyroid cancer about six years ago and I had to get it removed along with five tumors, the thymus, 11 lymph nodes, and a parathyroid gland. I've been struggling with my weight and depression since I was 20 and I'm now 32. I went to many doctors when I was younger around 19 and 20 complaining of a thyroid problem and they ignored me and said my blood work was normal and said that I was too young to have thyroid problems. It wasn't until years later I found a lump on my throat that it even got noticed. I was very angry because who knows how long those tumors had been growing on my thyroid and I didn't even find out it was cancerous until after the surgery. It has been a great struggle to lose the over hundred pounds that I've gained from this disease. I was extremely hypothyroid after my cancer surgery. Eventually my doctor made me hyper thyroid to reduce the chance of the cancer cells coming back but it was a huge struggle. I just got the sleeve surgery on February 9 I'm kind of panicking because I am also afraid that the 28 pounds that I've lost so far is all I'm going to lose. I lost the first 28 pounds quickly but for the past week and a half I've been stagnant. I'm going to see my Endo at the end of April and I'm hoping he can give me some answers as to whether my thyroid levels are affecting my weight loss because although he has me hyper I still have hypo tendencies.

I guess my point is that if you're feeling low and depressed and have no energy you need to go to an Endo and tell them to take an ultrasound and do bloodwork to figure out what your appropriate levels should be. The thyroid is a ridiculously important gland it affects so many things and that is why you don't feel well and you're not losing weight they need to level your hormones out. Demand an ultrasound if they say no at first because they didn't find my cancer with just the blood work. Good luck and don't let this get you discouraged. It definitely takes time but once you find a good doctor that will listen to what you're going through and put you on the appropriate medicine you'll be feeling better I promise. -Victoria

kaymus profile image
kaymus

I have this issue, I had surgery 9 months ago.

parsons5 profile image
parsons5

Hi, I had gastric band surgery 9 years ago, and lost 10 stone haven't really had any complications. Now am a very busy mum of three and was diagnosed as hypothyroid just after my son was born, he's nearly 3. Was initially on 175mcg of levothyroxine, then dropped to 150mcg, then dropped again to 125mcg due to blood tests coming back that I was overactive. I felt really well on 150mcg and 125mcg then my GP dropped my dose to 100mcg as still overactive I was reluctant to do this and have been feeling pretty lousy on and off for 3-4 months now. Cold, tingly hands, low mood put on about 1/2 stone that won't shift just feeling crappy!!!! Off to see GP tomorrow for blood test and chat does anyone up their dose themselves on days when they just know they haven't got enough thyroxine? Also just wondering your thoughts on how well you think tablets are absorbed from the gastric band pouch and whether this has a bearing on anything. Thanks all 😊

Angelinchicago38 profile image
Angelinchicago38

Boy, do I have a story! I am a gastric bypass patient, 10 years or so out and I am having tons of malabsorption problems all of a sudden. I also have a thyroid disorder that I've been dealing with for some 25 years or so. I can't stress this enough to anyone to seriously think twice about any type of gastric bypass surgery. I had done tons of research before I had mine 3 years plus and I never seen any information in regards to what I am dealing with now until after the fact, 10 years later, with others having the same problems. If I knew now all the information that I now know, I would never of had the surgery done. I have more health problems now than I ever did. I was at my highest weight at 350 pounds (The only problem i had, was my thyriod) and I lost 160 pounds with the gastric bygass surgery and I got down to 190. All was good for 10 years. Not even gaining a pound. It may have just been a coincidence but my father had died and soon after that I noticed that I was gaining weight. I don't know if it was due to the trauma of the loss of my father and or the correlation with the problems I was having with my thyroid as well. My thyroid was good finally at that point. I believe there is a correlation with the trauma that may have caused the problems with my thyroid to get worse suddenly. This also happened at the same time.So, it was also because of the change in my medications. I was always on name brand thyroid medication, Synthroid and I was always taking Armour Thyroid. I had moved to Florida and then they discontinued the Armour Thyroid, so I was told, and they said I could no longer get it and then they switched my synthroid to a generic brand and this is when all my problems began. My thyroid medication was increased to 500 milligrams. I have been seeing tons of different doctors and finally seen two different Endocrinologist to get their opinions. In a 7 to 8 month of time I gained 110 pounds. ( I balloned up to 300 pounds) There was no information or any type of understanding as to why this was happening, the second Endocrinologist that I went to for the second opinon I explained to her my story and I kept insisting to be put back on the Armour Thyroid, 4 grams and to be put back on the name brand Synthroid at 125 milligrams, as to the fact that this was what I was on before and that was what was working for me when I lived in Illinois. With tons of insistence on my part, she finally agreed to put me on the Armour Thyroid and the name brand, Synthroid medication, and within 5 months now I have lost 26 pounds, (274). All the while that this has been going on,my blood pressure medicine does not get absorbed and I think that is the same problem I am having as well with my thyroid medication, it wasn't being absorbed so they kept increasing my thyriod meds, as they have been increasing my high blood pressure medication because its not being absorbed. I went from one to 3 different medications. From 1 pill in the morning and one at night to now with increased dosage and 3 in the morning and 3 at night. I am also iron anemic and I'm having problems with my potassium, my vitamin D, and my B12, none of my Supplementation that I've been taking for all these years are no longer being absorbed and I have to get potassium by IV. I have had that 4x which burns and I have had 4 blood transfusions 2 pints each, last one was 4 pints, and now I am getting the infed transfusions, 3 treatments so far. I've had some type of reaction to the infed transfusions where my blood pressure goes through the roof and I've had to be hospitalized for over 24 hours to get my bp down. It was so high they said I could have had a heart attack, stroke, or I could have even died, with it being so high. They are running all kinds of blood tests, doing all types of tests and honestly, I am just so sick of all of this, all the doctors appointments, all the tests, all the treatments, none of my vitamins or supplements are being absorbed and I have a huge malabsorption problem and my medication that I'm taking for my thyroid and my medication that I'm taking for my high blood pressure is not working because they are not getting absorbed and they just keep increasing my medication. I am so angry because you have to fight for everything. YOU know your body better than anyone else and a lot of the tests that they do, certain things don't show up. In the long run the truth will come out that you were right in the things that you were feeling that were wrong with your body. The doctors look at you as if you're crazy or nuts and you don't know what you're talking about. Now, I too am trying to get everything in liquid form but that seems to be a struggle as well as getting the B12 shots covered by my insurance. If I continue to have problems I'm seriously thinking of going to the Mayo Clinic and see if I can get some help there because I don't seem to be getting any help from the doctors that I'm going to. No one seems to know how to handle it. It's struggle each and every day. I just found your blog today and I just had seen all the posts and I was reading all of the comments and it really concerns me where you made the comment in regards to risk of dementia, so that is something that I need to research now. Any more information you can give please? Also, I have Hashimoto disease. Angelinchicago38atgmailcom

Gastricmess profile image
Gastricmess in reply to Angelinchicago38

How my story compares with yours is parallel. I am so tired of being made to feel I am out of my mind. I may feel like I'm losing my mind, but I certainly haven't forgotten what life used to be like. Everyday is a diet and clean eating, but others perceive you screwed up yet again. The Epilepsy was the worst part.

Lvoutsidethebox profile image
Lvoutsidethebox

Hypo since diagnosed 2005. Sleeve 4/18. Feel so much better - I feel like this is what my thyroid meds should have done for me but never did. And my dr, I didn’t feel, understand anything thyroid -other than what labs say for healthy people ;(

Gastricmess profile image
Gastricmess

This is me. I had bypass in 2005 and weighed in originally at 307 and lost 122 pds. I wrote my original gain of 100 pds off to epilepsy meds and a half a dozen others. Then I went on a "diet" and ate only eggs and lost 150 pds. I am now up to almost my original weight again after yo-yoing and more meds, now having been found hypothyroid. My question is, was I hypo all along? Is being hypo post gastric bypass ruining my bypass? I still eat the way I am supposed to and do water aerobics. I cannot get a handle on this and am sick of hearing "low normal" on my thyroid when symptoms persist. Help, so sick of being depressed, in muscular pain, all other levels are good. I was deficient in many.

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