Ok I am hoping some of the forum members can help me if you would have the time to read my thread- 10 years ago I noticed a lump in my lower neck and went to see my local GP he diagnosed the early forming of a goiter and checked my bloods and said nothing to be concerned about. Over the years my neck remained the same until I became pregnant. I noticed some symptoms of thyroid disorder like dry skin , thinning hair and anxiety issues but I put that down to lifestyle. When I became pregnant all the usual tests was done and a thyroid problem came back. Underactive and I referred to endiocrine clinic a physical examination was done and I was put on 50 mgs levothyroxine. ( my TSH was 4.3 ) I was diagnosed with a goiter and possible hashimotos due to antibody level and ordered ultrasound - however my pregnancy was not straightforward and when my baby was discovered to have problems it became about baby and me was left behind. Postponing any further investigations until baby was born. Over time my thyroid i have notice shrinks and swells , huge stress has made it like that I do notice - my child has complex needs and hospice care so my life is very much orientated around him as a single parent. However i have had several appointments with local GP as anxiety stress and panic attacks that have became apparent and I get bouts of shakiness, times my thyroid swells as if its angry and goes back down and palpitations. My GP has advised my thyroid is inflammed ? She cannot feel nodules and states its quite large she advised my thyroid levels are within normal however my antibodies are quite high( I have asked her to disclose numbers ) she done a full blood panel and said i have a slight elevation B12 but nothing she's concerned around. She will not review my meds and I'm now on a waiting list for ultrasound. The anxiety she puts down to my situation. I have a good diet , exercise as much as I can but would appreciate anyone's help - what my next steps should be? What I need to ask for ? I guess to understand my situation I have spent two years living in a hospital with my son and understanding his condition and I am abit frightened having to go through it all myself also further testing etc. Before i gave birth i had full ENT team checking my airway before c section because my thyroid was large and pushing and proding every part. I'm frightened I guess but any help appreciated or advise.
Hi 118 and welcome to the board,
You have a lot going on in your life that would be hard for most of us to deal with so well done you for battling on, while you do not have many choices in this you are obviously staying on top of it and continuing to find ways to strengthen yourself to continue being strong for your child,
A goiter generally is part of thyroid disease. Presuming your antibodies tested positive for hashimotos you might find at times you are anxious, fast heart rate etc as you have described above along with periods of exhaustion etc which is typical of the hashi rollercoaster journey.
While your TSH might be 'in range' according to your labs, healthy people have a TSH of approx 1. The range has been reduced in some countries but its still not low enough especially as you have classic symptoms of is this.
Correct levels of medication can shrink goiters but you are only on a starter dose.
Selenium is also know to help with this so if you have no other options right now perhaps try supplementing but ultimately you will need proper care and an increase in meds to get you on the road to feeling better.
For testing purposes you should request
Cortisol (treating thyroid with too high or too low levels of this is contra indicated, out of range or even low or high in range will all affect it)
Frees FT4 and FT3. (Thyroid meds suppress TSH a good doc will treat you by your FT4/3 levels along with symptoms and these are far more important than TSH)
Iron/ferritin/saturation %/ TIBC (it is very important to have these at a good level)
If your cycle is off also possibly check your female hormone panel FSH, oestrogen testosterone progesterone etc. hashimotos can affect all the hormones in our body as can adrenal fatigue. Correcting adrenals and thyroid can help this immensely.
A note on iron. People with hashimotos tend to have low iron and can have low B12, (pernicious anemia) having high B12 does not necessarily mean you ferritin levels will be ok. I cannot comment on high B12, I have had no experience in this except to say if you take supplements with B12 or highly fortified cereals with b12 consider reducing the intake to bring your level back in range.
I am also going to suggest that when you see your doctor on this if he/she is unwilling to test for even some of the above, or continues to treat you on TSH only, do not waste time trying to convince them. Google top thyroid doctors in your area or ask at a local compounding pharmacy who uses natural dessicated thyroid, these prescribers are generally more forward thinking in pro active thyroid treatment and will be far better for you. You need to advocate for yourself in this and it is daunting, but you do not have the time to give to a doctor who does not have the savvy to treat your thyroid properly and the sooner you are treated correctly you will find new strength to continue your journey. I wish you all the very best. You need to try and make you a priority right now, hashimotos does not go away and it will continue to disimprove while you are under medicated.
Thanks very much Surfingfor answers I got my TSH redone and results just through- TSH 3.82 and serum free T4 is 16.0? My cortisol test came back 4.43 ? The doctor advised its all normal ? I'm on 50 mgs of levothyroxine . My antibodies are 50? Thanks
do you happen to have the lab ranges that were used for your tests?
for someone on medication and even someone who is not, your TSH is not 'normal' as i said earlier, most healthy people have approx 1.
your Ft4 is 16, if this was done on a 12-22 it is a little low even though it is 'in range'
your cortisol is 4.43 if the lab range was 6-23 u g/dl then this too is low out of range though i suspect this is not the lab range used as i am sure your doctor would have investigated this. so you see why the ranges are important.
antibodies confirm your hashimotos and i suspect your doctor is treating by TSH and does not use FT3 which is very important alongside FT3, once on meds the can generally be ignored but yours is not being suppressed properly by the meds showing you need a raise.
it really would be worth your while to research a doc who will treat you and not your TSH. the thyroiduk support site might be useful, you need to find someone who treats using symptoms and frees and also prescribes NDT (natural dessicated thyroid) however, you might also be looking for someone who can help assist your adrenals in conjunction with your thyroid, depending on those lab ranges.