Thyroxine dose weight change

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I recently moved temporarily to the U.S. and had my dose reduced from 100/125 mg on alternate days to 88mcg daily.  I have had a weight gain of 15lbs but the Dr insists the new dose is correct as per my blood test.  I don't think the U.S. And UK have such different guidelines. Does anyone have advice or similar experience. TSH 1.32, T4 free1.1, T3 free 2.5.  Thanks.

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  • Posted

    Hi Ali:  Usually doctors go by guidelines from either a book called a PDR, aka, Physican Desk Reference. It is also online now. They also use guidelines from the different drug companies who make the medication. I am an RN and live in USA, but I also suffer from Hashimoto's, which gave me Hypothyriodism. I enjoy this website and we do not seem to have one like this in USA. It is nice to talk with others who suffer with the same disease. I would say USA and UK are similar but the big difference may be in the doctor you have in USA. In USA a person can sue an MD fairly easily and in the UK  you can't so  much. I don't 100% know, but your healthcare is covered by your government.  Some doctors here in USA have a fear of it and maybe this doctor feels he is being more conservative in his approach. He may be on the low side since he felt you were getting maybe to large of a dose. That is what I think. Please tell him to up the medication if you feel tired and are gaining weight. Better yet,  see a different doctor or Endocrinologist  if you can.  Explain your symptoms and the meds you were on in UK and say I need that doseage. I hope this helps.
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    • Posted

      shellyC19, I have a question for you. I am hypothyroid, but the TSH level is low, 0.1 usually, the highest it's ever been is 0.396. How can I be hypo with the TSH low? I get no answers from my endo. Basal body temp is as low as 95.2, it averages 96.4. Really tired and freezing all the time. The enod won't change the med. I currently take 50mcg 6days per week, none on Sunday. The left side was removed in 2010, now nodules in the right side and on the isthmus. And...a mass 4.9x 2.6x 3.6 cm from the left thyroid bed to the substenal region. The endo says this is no problem. (??) I have had trouble swallowing and breathing especially at night. She says I don't need to see her for a year? I'm disgusted and have made an appt. with another endo, on 4/30/15. I am also in the US. As far as I know, they have not done antibody testing. Any suggestions here? I'm at a loss and very disgusted with being so cold and tired. My pcp ordered a TSH w/reflex to free T4 and it was low, .186 Repeated it and it was still low, but .349. My liver enzymes are now elevated, too. ALT126, AST 69 and ALP 119. This is nuts...why don't the doctors listen to our symptoms and adjust the medications accordingly, so we can have a half normal life? I'm hoping the new endo can help, thanks...

      And Ali, I sure hope you can get better. The dose you are on now may be too low. Not sure why they don't listen and consider the symptoms along with the lab work. It's a mystery... :-) Best wishes to you, maybe a different doctor will help.

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  • Posted

    HI Christine:  Low thyroid can give you many symptoms. Most common is, no periods or infrequent, easy weight gain, intolerance to cold weather, feeling tired and unable to think clearly or foggy brain. Muscle aches are also common. If left untreated it can cause a goitre to develop and cause early menopause symptoms.  Most women do not know they have some of the symptoms of Hypothyroid  until they are tested. Some rare symptoms also can be mild fever. So Yes, unexplained weight gain is a symptom of a low thyroid. I hope this helps.
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  • Posted

    Hi Ali,

    You did not put your reference ranges on for the Ft4 and FT3 in my opinion they look too low and there is room for an increase in your levo, even if only for a 3 month trial to see how your symptoms go.  Doctor should not lower dose when you are feeling well, stand your ground and if they wont listen then move on find another dr.

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  • Posted

    Hi Wendy:  Having 0.1 is of course way too low. Our thyroids make 2 horomones  T3 & T4. In some people and I am one of them, we can't take T3 and have our bodies convert it to T4.  Some people can't convert T3 and some people have Mal-absorption problems. You need to get a much better doc. You can call your insurance carrier and get names of ENDOCRINOLOGISTS and take your file from the one you see now. Nodules are serious since they can interfere with converting of T3 & also can turn cancerous. Please get that looked at and demand a biopsy of them. Have you had that before? YOU should NOT be having trouble swallowing. That mass you describe sounds like it could be pressing on your throat also, which is not acceptable!   Now,  as to liver enzymes a few things can cause that. Thyroid troubles, Chroinc disease in the body, alcoholism or abuse of it, and cancer. Please ask for testing for Lupus, Rhematoid Arthritis, Fibromyalgia, and Hashimoto's Thryroiditis.  Also they need to check your B-12 level and RBC count and sedimentation rate. The sed rate tells if you have a cancer or autoimmune disease problem. Keep the appt. with your new doc and explain or write down the symptoms like weight gain, cold , muscle pain etc.... I hope this helps.
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    • Posted

      Thank you for your reply, shellyC19. My records are being transferred to the new endo. They did do a biopsy on one nodule, the one on the isthmus, it was OK. RBC count was OK. FT4 is in the normal range. I'm not sure the T3 has been checked. I previously had brain cancer, left temporal lobe, with gamma knife radiation. I agree, need a better doctor. She pays attention to nothing. The ultrasound done with the biopsy said "can not exclude Hashimoto's thyroiditis" but no testing was done to confirm or rule out. And the last ultrasound stating the mass is "probably a substernal goiter" no further testing was done either. I think this further supports my advice to change doctors till you find one that listens and acts accordingly. I guess we have to be our own advocates. Sad but true. The new endo is supposed to be a top notch one, I hope so. Thank you for your advice, really appreciate that. :-) By the way, I don't drink alcohol, only on a rare occasion...lol. I definitely will keep the appt. with the new doctor, looking forward to it. And, I'll make my list and check it twice. Thanks again.
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  • Posted

    Hi Shelly and Helsbells.  Thanks for your advice.  I have seen two Drs in the practice and both say I am on the correct dose.  I only have the info' from the blood test which I listed.  What might the other Ft3 and 4 show?
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  • Posted

    The FT3 & T4 levels in your body are certain horomones that a normal person's (who does not have any), Thyroid disease makes and the  thyroid gland keeps it in balance. When you have either Hypo or Hyper Thyroidism these levels can go haywire. In some people they can not convert say T4 in their body to T3, which is very important.  These tests should be performed to see if the amt. in your body is at a correct enough level for you.  The thyroid meds are not natural horomones they are synthetically made so you have to  see how much is in your blood stream freely.  It usually is ordered but sometimes it may not be if the doctor is relying on just the TSH level, (Thyroid Stimulating Horomone)  0.34 to 5.60 is normal level, but if your doc did not order T3 & T4 level, you could be low on say T3 and the doc really would not know from just the TSH test alone. So it is important to get these tests done because otherwise you really are putting all your eggs in the TSH basket.  I hope this helps.
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    • Posted

      Thank you for that explanation I have had my thyroid removed and this is the first time I have understood what my body should be doing and what information I need, again thank you
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  • Posted

    Thanks Christine:  I try to help. As an RN - I know doctor's just don't take the time to explain how it all works. Since our bodies as women are complicated, this is a great website for support and sharing ideas/stories and helping people. We are not alone and now we can met on here and this is great.
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  • Posted

    I was on 200mcg thyroxine (in winter, 175mcg in summer) but have been able to reduce it by 25mcg since I started taking it on an empty stomach at least 30 minutes (preferably 60 mnutes) before breakfast. Advice now is to leave 4 hours before iron or calcium medication as these affect the absorbtion of thyroxine. I'm not medically qualified but I interpreted this as being 'it doesn't get used by your body so it stays in your bloodstream' - net result is underactive symptoms but blood results that suggest you are overactive
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