Hi everyone, I am looking for some opinions and advice regarding my daughter who is 19. To make a long-ish story short, she has tested as very mildly hypothyroid. Her last result was TSH 5.24 . She has had it tested twice before, over a period of about 6 months or so and both of those came back as mildly hypo also.
I am concerned because she has gained a fair bit of weight. She is usually quite tired and lethargic which seems a bit unusual for her age. The GP says that her TSH is "normal" and she needs no "further action or treatment".
I am hypothyroid as was my grandmother. I obviously don't want her to have to take the medication if she doesn't need it however I can't help but think a very small dose, perhaps every other day, might help to determine if it would be helpful to her.
What say you?
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minxabroad
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You need to get her antibodies tested. Thyroid Antibodies TPO and TgAb. If they are positive then she needs levothyroxine. Even if not positive, a TSH of 5.24 is too high. Unfortunately, a lot of doctors in the UK have been told that it's not necessary to treat unless TSH is higher than 10.0 which means people suffer for years before being treated.
I think that Clutter or shaws may have advice from Dr Toft that you could take to an appointment with your daughter showing that she needs treatment.
When you say The two members may have advice from Dr. Toft that I can take do you mean pages from this site that I can print out or shall I approach these members for the specific advice. Who is Dr. Toft? Thank you.
Ignore 'normal' from the doctors. You know your daughter better than anyone else and if you are in the UK, the 'rules' are that we have to wait till TSH is 10 before being diagnosed which is ridiculous.
In other countries we are diagnosed if TSH goes abot 3+.
With a TSH of 5+ she is hypothyroid also considering her clinical symptoms.
She needs a 'proper' test and NHS appear not to do so, they appear to take TSH and T4 only. All tests for hypo have to be at the very earliest, fasting (she can drink water) and allow 24 hour gap between levothyroxine (when she's prescribed) and the test and take it afterwards.
She needs TSH, T4, T3, Free T4, Free T3 and thyroid antibodies. Antibodies are the commonest cause of hypothyroidism.
Doctor should test B12, Vit D, iron, ferritin and folate.
If your doctor will not do all of the above tests for hypo, you can get those not taken from a private lab. We have two who will do them. One has a Special Offer every Thursday.
Both labs are good. They are home pin-prick tests so she must be well-hydrated a couple of days before blood draw.
Post the results with the ranges for comments. Results are no good without ranges as labs differ and so do the ranges. It enables members to comment.
Thank you both very much. I didn't go much into it before but I have had nothing but problems from the GP's we go to and have had to fight to get her tested in the first place. A little over a year ago I took her in due to her tiredness, lethargy and mild weight gain along with a bit of a worry about her height (I know that young people with un-diagnosed hypo can have somewhat stunted growth. Not only is her height out of proportion with ours but there is a lack of muscle tone too), hoping they would test her.
I thought perhaps it was low iron responsible for the tiredness/lethargy but I asked for a thyroid test also. I was told by that GP that she had never seen a young person with hypothyroidism and there was no need to test her. In fact, she said she would not test her. I was very angry.
We carried on for almost a year before I could get my daughter to go again (she is terribly shy and was really upset at the near argument I had with the GP the first time). The next GP did give her the tests which showed mild hypo. They told her without my knowledge that once she started taking the medication, she would always have to take it! When she told me that I explained to her that it wa snot the case- if she took a low dose and it made her feel poorly, she did not have to keep taking it.
They told her to come back in 3 months to have it checked again which I was not happy about as her weight had really jumped up so I insisted she have it done sooner than that and after approx. 8 weeks it was done again which was this last time. We requested very clearly that the T3 and antibodies be done but when the results came back, neither was done.
We called the GP and after a heck of alot of trouble to speak to someone (I am trying to avoid the boring conversation about how really poor this particular GP surgery is) we finally spoke to another gp at the same surgery who said it was right that she should not have any treatment for the hypothyroid and that it was not bad enough to require any medication. That gp also said that she "thinks the labs decide if the other tests need to be done" and left it at that when we inquired about the T3 and antibodies.
I admit to feeling at a loss as to how to help my daughter. I know that no one would take it remotely seriously to investigate her legs/height/muscle tone issue which could be nothing to do with it of course but then again it could be that this issue has been with her a long time and not diagnosed because it had not been "bad" enough to be quite obvious. I spoke privately to the GP about the leg issue and very quickly explained why (as they give you 5 mins for a phone appt). He said he would have a look but never did.
My next course of action is to change GP's but we are very limited as most will not accept you if you are further than 3 miles away. I will just add that I beleive the first time she had the tests she had the T3 and antibodies checked (the labs must have thought it was ok to check that time right?) and I will find those results and post them here hopefully tomorrow.
Thank you Nanaedake and Shaws for making me feel right in my concerns and for the excellent advice.
First, all blood tests for thyroid hormones have to be the very earliest possible, fasting (she can drink water). If you want to include in your reply more than one member you have to add an @ before their name and a list of possible names will appear below and you click on the one you want i.e. Nanaedake .
You always have to get a print-out of the results with the ranges as labs differ in their ranges and it is necessary for a response. Doctors have been instructed than only TSH and T4 is necessary, but we know that's not the case.
Not to eat anything when you wake up until after blood test which should be the very earliest possible. This helps keep TSH at its highest and may prevent unnecessary adjustment in dose.
p.s. also leave 24 hour gap between your last dose of levo and the test and take afterwards.
Hi, I replied at the bottom of this post but not sure if anyone saw it- so I'm trying by replying here. Any opinions regarding those few results greatly appreciated. Thank you.
minxabroad I'm sorry about your GP's apparant lack of concern but many of us have faced similar indifference. It seems like hypothyroidism is not something doctors find interesting or important. However, people on this forum surely know what a huge impact it has on lives, many having lost jobs, friends, opportunity and pay as a result of slow or incorrect treatment of thyroid imbalance. I hope you can find a more interested doctor and find a way to get the right treatment for your daughter.
Many of us find there is a lot we can do ourselves. Nutrition can make a difference and she may benefit from a low carb high fat (good fats) diet as recommended by diabetes.co.uk/ Lots of good recipies on their website or links. I have found low carb means I eat a lot more healthy food as I don't fill up with foods that lack nutritious value. Some people find gluten free is helpful but as she is young it's best to be cautious and ensure a nutritious diet to give the body the best chance to absorb essential vitamins which will help her own thyroid to function at its best. Making sure iron levels are good is important for young women.
As Shaws has already mentioned, get the doc to test vitamin levels as suggested.
Hello again @nanaedake and @shaws - I thought I would stop by again with the blood test results for my daughter over the past year to see what you think.
We have tried to get them to test the antibodies and T3 several times but they have not done so. We are switiching to a new GP today and hoping for better treatment. In the mean time could either of you lead me to more info on the private lab special Thursday offer mentioned above just in case the new GP is not as helpful as I am hoping?
The blood test results I have for her as follows. They include some tests not directly thyroid related just in case there is an indirect indication of something:
Serum C reactive protein "Above Range" 8mg/L -(0.0-4.0)
Serum Ferritin "Below Range" 9ug/L - (11 - 307)
Serum 25 hydroxy Vit D3 "normal" 58 nmol/L - (Vit D>50 is sufficient for most people)
The GP did not want to give her Iron and asked her to rely on the iron in her diet but eventually did give in to giving her iron tablets. GP suggested she was tested again in 6 months time but I was insistent she be checked again sooner than that so she was tested again in June. They only tested several things, not the FBC.
JUNE 2017
----------------
Serum free T4 "normal" 11.4 pmol/L - (7.9 -13.3)
Serum TSH "Above Range" 3.58 mU/L - (0.9 - 3.11)
Serum C reactive protein "Above Range" 7 mg/L - (0.0-4)
September 2017
--------------------------
Serum TSH 5.24 mU/L (0.38-5.33) This is now in range as the reference range for Serum TSH was changed from August 2nd but obviously would have been ABOVE RANGE if it had been a result in either of the previous months tests.
I suppose there is not much to say other than she needs the antibodies and the T3 checked? What say you?
Yes but the name has to turn blue. When you put the @ and then put the first couple of letters if you (give enough space below) a selection of names will appear and click on the one you want ie minxabroad .
shaws regarding your following statement from some time ago:
"If your doctor will not do all of the above tests for hypo, you can get those not taken from a private lab. We have two who will do them. One has a Special Offer every Thursday."
- Can you give me more info about this please? Thanks.
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