Hypothyroidism

MJG1

Hello Survivors!

Dennis is slightly past one year from the end of his powerful chemo(s) and 35 radiations to his head and neck area.  He has done darn well post treatment, but there are some bothersome residuals.  The thyroid seems to be increasing each time he has blood work, but he has not hit the number where the Endocronologist will medicate him.  My question is how long did it take you to get to a point that thyroid meds were necessary.  What were your symptoms before mediated?  Even though my husband's numbers don't allow for medications I really think he needs meds.

For those of you who wonder...Dennis had stage 4A Hpv driven Head and Neck Cancer ..right base of tongue, 4 lymph nodes, 1/2 the hyoid bone, and right tonsil.

 

Thank you for any guidance, opinions, help, ideas...

 

Margi Greene

CivilMatt

it is always something

 

MJG1,

For what it is worth, here is my progression from 6 months to 21 months  post.

I am on meds and seem to be  less tired.

Good  luck.

Matt

 

DanceSkater

My numbers

Hi MJG1 !

My chemo and rads ended early June 2016.   First  lab that a doctor included a look at the thyroid number that I'm aware of was done on 10-10-17.   The number was 8.474.   Went on meds.  Next test done on 12-11-17, the number was  6.808.  Slight increase in meds.

Other than losing hair, I really didn't have any symptoms of hypothyroidism that I'm aware of.  Due to the meds, I'm now losing LOTS of hair.

I'm a 68.5 years young female.  5'5"   120 pounds.

Jan

MJG1

DanceSkater said:

My numbers

Hi MJG1 !

My chemo and rads ended early June 2016.   First  lab that a doctor included a look at the thyroid number that I'm aware of was done on 10-10-17.   The number was 8.474.   Went on meds.  Next test done on 12-11-17, the number was  6.808.  Slight increase in meds.

Other than losing hair, I really didn't have any symptoms of hypothyroidism that I'm aware of.  Due to the meds, I'm now losing LOTS of hair.

I'm a 68.5 years young female.  5'5"   120 pounds.

Jan

thyroid

Thank you for sharing.  Dennis' numbers aren't this high yet.  So maybe his thyroid will go more slowly.  He does have some symptoms so I sort of wish it would go if it's going to so he can get help for the other symptoms.   Continue having good health and Merry Christmas!

MJG1

CivilMatt said:

it is always something

 

MJG1,

For what it is worth, here is my progression from 6 months to 21 months  post.

I am on meds and seem to be  less tired.

Good  luck.

Matt

 

Your chart

Matt, Thanks for the response.  Dennis' numbers are a lot lower than yours so he's still considered in the normal range, however, I can see them trending upward.  I'm going to make a chart like this.  Good idea!

Thank you!

Margi Greene

Kenny-

hypothyroid

I went on meds about ~6 months post treatment, starting from the lowest dose (25 mcg) to currently on 75 mcg thyroxnie. I am about 2 years out, and full replacement for me is about ~125, so indeed, my thyroid is pretty damaged. 

SASH

When to Med

I beleive I went on Thyroid meds about 8 months post completion of Radiation, slightly less time from Chemo and surgery.  Some of my symptoms were unable to control temp, softer than normal finger nails, and fatigue.  There were even times that my head would just about land in my dinner because of the fatigue.

wmc

For what it is worth...

I never had chemo or Radiation. My surgery [I was going into surgery as T4; N2c; M0; and this was the only opinion I had. My lungs are very bad.]  removed my Larynx and did a neck dissection on both sides 2~5.  I have been on thyroid 81% of my life. I started at 12 and now 66. During my surgery, they found I was born with only about half a thyroid and 3 of the 4 Parathyroid. You may be tired, but that doesn't always mean your thyroid is low. Radiation often will damage the Thyroid gland. You do not want to take thyroid if you don't need to. That can cause a lot of problems you don't want. I had to have my dose increased due to a sinus pill I took many years ago. I was tested every year back then, and now I have it checked 3 times a year. So I stopped the sinus pill and they never readjusted my thyroid. By law back then it had to be checked once every two years. I got over medicated. Now it can affect others different, but this what you can expect.  Your hands sweat often; your stomach and digestion can get all screwed up. Some foods will upset you so bad, you have to take antiacids Before I ate. Taking them after was too late and I had to Run to the bathroom. Food went right through me. Almost nothing was in my system 36 hours which would be normal. If I ate corn, I could pass the corn in 20 minutes. You can be irritable easy.  I moved and had a New doctor who was Much better. Now I was taking Armor real thyroid for 20 years. He switched me to Synthroid [Man made] which is the same for every pill. Armor can vary from pill to pill, so you had some ups and downs. All the generic stay consistent, which is much better.

Thyroid is a med that builds up in your system, and do not take calcium meds until an hour after the Thyroid. If yours stops working to full capacity and you do end up taking them, it will take a few months to get it dialed in. You will take it for about 3 to 6 weeks and adjusted. Then same thing again. They will get it dialed in, IF you need it.  I have never gone to an Endocrinologist ever. My PCP has always done it for me. Some end up needing it just to kick start theirs to working fully again. If you do end up with needing thyroid, They will tell you it should be taken by its self 30 minutes before all other meds and 8 oz. glass of water, also to take it the same time every day.  As with all meds and the New Rx have the Pharmisests go over it with you, and read all the "possible" side effects.  I read all the information for a New med to see what to look for if anything feels different. Now that is what I recommend.  However, I take all my meds [14 ] when I wake up and it can be as much as a 3 hour difference. Then I have been doing that for over 40 years that way. Now I don't take any Calcium within an hour of the Thyroid. I have been the same dose for the last 25 years. It can take awhile for the Radiation to affect your thyroid. Best to you and hope you won't need it, but if you do it is inexpensive and very small.

WMC  Oct 2013

Mom68

Thyroid

I'll just throw this out there...I've been on thyroid meds for years now (probably 10?) and this was before I was diagnosed with cancer. Different doctors have different standards when it comes to thyroid. I had one doc that refused to put me on meds and said I was just being emotional. No, dude, my hair was falloing out and I was tired all the time. So, off to the next doc. She tested me, put me on meds, but the TSH (is that the number you all are referring to?) was at almost 10. That is way too high. I had a friend who pulled me aside (she was recovering from thyroid cancer) and told me that my TSH should be at around 1. I talked with my doctor about this, and she upped my meds until we got my TSH to 5, but I still felt it was too high. I found another doctor, this time an endocrinologist, who upped my meds and they got my TSH to right around 1. Once I got to that TSH 1 mark, I cried because I hadn't felt that good in years. I know that TSH is a touchy issue, as some folks say that TSH 3-5 is fine (and I think that is the current AMA guideline) but my personal experience and my quality of life changed once I got my numbers down closer to 1. I'm currently on 88mcg of levothyroxine, and have been stable on that number for years. 

Fire34

As Soon as Treatment ended

I was put on synthroid as soon as treatment ended currently on 88mcg

Dave

Skiffin16

Levothyroxine

I was treated early 2009.., TSH has been high (5 - 7) since, T4 was always in. Recently though I had been getting increasibly fatiqued.., TSH was at 12+. So now I'm on meds (Levothyroxine). I started at the minimal 25micrograms, bumped to 50 after 3 months because I was still at 7+ TSH. More than likely I'll will get bumbed again until the correct dosage is found.