Update on my 18 year old daughter with secondary hypothyroidism, and a TSH query

[Cookerybookaddict86]

I haven't posted on here for a while but I received some really helpful advice early on this year when my daughter was very ill with chronic fatigue caused by probable secondary hypothyroidism and iron deficient anaemia.

We initially saw a fairly unhelpful endo who refused to prescribe more than 40mcg of Levothyroxine as she was worried that her TSH was getting too low. My daughter's FT3 level increased from a paltry 3.4 to 3.7 on this dosage, while her FT4 increased from just 12.7 to 14.85 and she still felt absolutely dreadful. We eventually decided to get a second opinion from another endocrinologist who was recommended by someone on this board, and the first thing he said to us was that TSH levels should be ignored when treating secondary hypothyroidism. We were so happy to hear this! He immediately increased her Levo to 75mcg and said he would consider adding T3 if she still didn't feel any better.

In the last few weeks my daughter has started to feel much, much better and many of her hypothyroid symptoms have gone - her hair is no longer falling out, she feels warm again, her LDL cholesterol level has more than halved since it was tested back in March, her IBS is much improved and she no longer feels sick and bloated after eating, and most importantly, she feels much less fatigued. She did have an iron infusion about a month ago which has probably helped as well. She's now applying for part- time jobs and is restarting her A levels soon which we didn't think would possible a few months ago.

The only fly in the ointment is that we've just received her latest blood test results from Medichecks and her TSH is now very low:

TSH - 0.08 (0.27-4.2)

FT3 - 5.18 (3.1-6.8)

FT4 - 20 (12-22)

We're slightly concerned that her new endo, who we're seeing again next week, will want to reduce her Levo as her TSH is so low. However from everything we've read on this board, a suppressed TSH isn't a problem unless FT3 is over range - is this correct? My daughter is now feeling so much better and would hate to go back to the way she was feeling previously.

[klr31]

Can you return to the endocrinologist who you saw for a second opinion? The one who increased your daughter's thyroxine.

Karen

[Cookerybookaddict86 in reply to klr31]

Yes, we're definitely going back to the second endo as he seemed much less obsessed with my daughters TSH levels (fingers crossed). We have a follow up appt with him next week.

[klr31 in reply to Cookerybookaddict86]

Well, hopefully he will be as good as last time and not be obsessed with TSH.

Good luck.

Karen

[klr31]

Glad to hear that your daughter is improving.

[SeasideSusie Remembering]

Cookerybookaddict86

If the endo wants to reduce her dose you have to point out that FT4 and FT3 are within range so she can't be overmedicated and if she has a diagnosis of secondary hypothyroidism then remind the endo that TSH has to be ignored, try to find a way of politely suggesting he gens up on it!

Or continue with the endo who does understand.

[Cookerybookaddict86 in reply to SeasideSusie]

Thank you, we're definitely not going back to endo no 1, as endo no 2 seems much more knowledgeable on medicating for secondary hypothyroidism!

[Km27]

HiAs the second endocrinologist stated the TSH levels are to be ignored, I have hypopituitarism and take 150 Levo daily. There is nothing wrong with my thyroid however my pituitary gland doesn’t tell my thyroid gland what to do. My TSH levels are always extremely low but my endocrinologist at Kings always assures me that this is ok and to be ignored. I am pleased your daughter is feeling better and starting to live her life again. I would stick with the second endocrinologist and try not to get too focused on TSH levels.

[Litatamon]

How wonderful to hear. Thank you for updating us - it is nice to hear a positive outcome.

As for the TSH, I am not sure if you were the poster that I shared this but even the Synthroid dosing guide says that the TSH should not be a factor in treating secondary hypothyroidism. So I think you are already in a good position with these last set of tests,

All the best to both of you..